So, in case you didn’t notice, there was a bit of a kerfuffle recently on Skepchick about ableism. Turns out, not everyone on Skepchick has the same opinions, and we all make mistakes. But this experience did teach us one thing: we don’t have enough disabled voices on this network. So, we’re starting a sister site for people with disabilities! And we want YOU to write for us (well, if you’re disabled and like writing). Last year we had two posts for “Blog Against Disablism Day.” One was by Chris Hofstader, and one was by me. If you’d like to contribute to this new blog, please apply!
We’re looking for people with physical or mental (or both!) disabilities who are willing to write at least one article every two weeks. The positions are not paid, but you will get more recognition, the chance to talk about your disability, make the world a better place, and be part of a kick-ass international network.
We will be accepting applications until Friday, March 21st Sunday, March 16th, so please get your applications in as soon as possible! (Edit: We’re moving up the deadline due receiving to more applications than anticipated.)
Questions About Applying!
I have a disability! Can I apply?
Yes, please do!
What if I have more than one disability?
All the more reason you should apply!
I have a mental, not physical, disability. Can I still apply?
Certainly!
My disability isn’t officially diagnosed. What do I do?
Apply, and we’ll move on from there.
My disability is really rare. Do you still want me to apply?
Yes!
I don’t have any real blogging experience. Can I still apply?
Yep! Although if you have some kind of writing examples to share, that would help (we’ll contact you for them after you apply).
I have a serious physical or mental illness, but I don’t personally identify as “disabled.” Can I still apply?
Sure!
I don’t have a disability, but I think I have really valuable opinions anyway.
Please don’t apply.
But that’s discrimination!
No, it’s not.
Hi Sara – what about a parent of one (or more) disabled/autistic children. Can they apply?
Thanks!
Nancy
Hi Nancy! That’s a good question– I’d say apply & we’ll figure it out from there. :)
I know Skepchick has a parenting blog – having more parents of special needs kids might be appreciated there. :)
Hi Sarah… Actually, it isn’t me, but I have friends who have autistic children. I want to share this to help spread the word, and wanted to find out before someone asked me…
:-)
While I’m not disabled, I wanted to put out there that a guide to web design/blogging accessibility would be nice. For instance, don’t tag a post with a potentially seizure-inducing GIF as ‘epilepsy’ or ‘seizures’, but as ‘seizure warning’. (On the plus side, most seizure-inducing GIFs are also bad design for other reasons.) Also, brush scripts, image maps, and image links without alt text (In HTML, this is the ALT in an IMG tag.) are just plain rude.
Applied! This sounds awesome and I’d love to be a part. :)
HI all,
Just wondering why you’re’ creating a “sister site” for people with disabilities? It seems to me that could be seen as exclusionary rather than inclusionary. Wouldn’t it be preferable to have people with disabilities contributing to the main site?
Are you a regular reader of Skepchick? We have posted about disability on Skepchick main for quite a long time (myself included). For example, here are three articles that have been written in the last year about disability:
http://skepchick.org/2013/08/disability/
http://skepchick.org/2013/12/what-no-one-tells-you-when-you-get-diagnosed/
http://skepchick.org/2013/07/disability-disenfranchisement-and-disbelief-an-interview-with-sb-morgaine/
We have a sister site for parents, and LGBT people, and teens, and educators. This is so we can focus on topics that affect these communities more. We have a sidebar on Skepchick main that lets people know what’s been posted on sister sites recently, and we do a weekly “In Case You Missed It” roundup of what happened on the sister sites as well. Further, we cross-post when a topic is relevant to more than just one subset.
As a disabled woman myself, I see this as a way to get more voices heard & to focus on more in-depth topics in regards to disability than as exclusionary.
I’d just like to add that the great benefit of the sister sites is that by creating default in-network (safe) spaces for the discussion of their particular concerns, they build larger communities around those concerns that enrich Skepchick prime not only in terms of contributors and cross-posts, but also in terms of readers, commenters, and behind-the-scenes input (which is substantial if unseen by the general public).
Sister sites are not ghettos; they are more booths at the con.
I think there are some things about the Skepchick websites that can be much improved to be friendlier to people with disabilities. A couple things that have stood out to me are the contrast (or rather, lack thereof when writing in the comment box) and whether ALT text for images is being used by all the writers. I think there is something like that for text itself as well, but I am not as familiar…?
I have to admit, given the timing and the complete dearth of anything even remotely resembling a retraction or apology on the actual site from the people in question, I find this suspicious. It feels a lot like tokenism: My Disabled Friends say I’m okay!
Can you assuage that fear for me?
Another thing: If you’re considering allowing DD parent bloggers on here, consider whether you’d allow that for physical disability or chronic illness. Would you allow a parent to talk for people with Crohn’s or paraplegia? If not, why is it okay for them to talk for developmentally disabled people? As well, you don’t allow parent bloggers on the GBLTQ site if they are not themselves gender or sexual minorities. Why allow non-disabled parents on the disability site? Given how people with disabilities – particularly those with cognitive and developmental disabilities – are often infantilized, parent bloggers on a disability site would be problematic. I’m not opposed to parent bloggers blogging on the parenting blog, but a disability blog should be about disabled voices, not yet another platform for the currently-able.
If you ignore the above, I can only implore you to vet your disability parent bloggers very carefully – a lot of parent bloggers out there in the autism blogosphere peddle some very toxic ableism. There are some good ones – Ariane of Emma’s Hope Book comes to mind – but there also are some very bad ones (including at least one that I know of who blogged at a place called The Status Woe and went on to try to kill her kid, just to give you context for just how toxic some of these people can be).
Finally: Please institute a policy where people defer to those with a thing. During the blow up, there were a lot of people whose arguments basically boiled down to, “I have a mental illness or physical disability and I don’t think it’s ableist.” I’d argue that ableism is at least several different but related axes of oppression (mental illness, chronic illness, physical disability, and developmental and cognitive disability). That a person has a mobility impairment does not necessarily qualify them to talk on mental illness, for example – I can talk on chronic illness and developmental disability, but not cognitive disability, mental illness, or physical disability. Please recognize this when you’re starting it up.
I wish you the best. I might apply later after it’s up and running and I see what tone it takes – given the previous blowup and the victim blaming and gaslighting I was subject to recently here, I’m too wary to apply right now. I hope this is actually an attempt to be better.
Hi, Chemgeek. I’m a disabled woman & I’ve been blogging for Skepchick for 6 months now. This is my project, and while the recent debate was the catalyst for this, it isn’t “tokenism” or anything like that. It’s a way to get more disabled people’s voices heard & have our issues be talked about more. I wasn’t a part of the ableism fight recently, and since this is simply a call for writers, I felt it was inappropriate to go into specifics of that discussion in this post. Since I did not participate in the ableism discussion at all, it would be inappropriate for me to apologize for it.
I am aware of Autism Speaks & their issues, and I don’t want to repeat that. But if there is a 16 year old person with autism & they have great ideas but struggle with writing, I would be fine with a parent (or other close friend/family member) helping them. I would rather turn people who applied down than to miss out on great writers because they felt they shouldn’t apply. I want to be open to people with different needs.
As an actually autistic person (and one who has applied) I have to agree with chemgeek here. I think your scenario of a 16-year-old autistic person (please understand that many of us despise “person first” language) who needs their parent(s)’ help to write their ideas down is highly unlikely, and allowing parents to apply for them would be inviting enormous problems. Parents and other family members have a long history of speaking over and for autistic individuals, and generally being ignorant of how autism functions from the inside while doing so. Myself and a number of other adult and young adult autistics within our own community have gone toe to toe with these people many times. Our voices are ignored and drowned out. We experience these abuses not just from other people’s friends and family members, but from our own as well.
I happen to know some autistic people who are ALSO parents, who would be much better suited to getting a parenting view on the matter if you’re interested in that. However, I don’t know how much I want to be part of a site that would consider allowing someone else to speak FOR us, no matter what scenarios you imagine would come up. We can and do speak for ourselves all the time. I suggest you check out the blog for Autistics Speaking Day (http://autisticsspeakingday.blogspot.se/) and reconsider your position. As I mentioned, the scenario you paint is a highly unlikely one. In this day and age, many of us, of all different ages, are already on the internet and it is fact fairly common to see us writing. Opening the door to parents who are pretending to speak on behalf of their children is, I think, a far bigger disaster than the small chance of missing a person or two who might have had some good ideas.
I did respond to the question you posed. You were not happy with my response, and since I felt repeating myself would be a waste of time, I opted not to do it. However, you and your partner have not stopped harassing me over this in the comments, so I guess I’ll respond again.
So, again: yes, I understand that the scenario I gave as an example is unlikely. However, *I want to be open to that scenario if it does come up.* I am not going to accept parents as bloggers without a compelling reason, as I’ve previously mentioned. The worst case here is that I tell them no, they can’t blog for us. I would rather have more applicants than necessary & turn away some people than miss out on potentially great people because they felt their circumstance was too unique. I used to know a woman who didn’t have control of her hands, so she dictated emails & messages to her mom, who would type them for her (because she had a very soft voice & using a voice-to-text program was difficult for her sometimes, as it had trouble picking up on her affections). If she applied, should I say no because her parent is involved & helps her write? Further, yes, it is the internet age, but that doesn’t mean everyone is a good writer. Several people who’ve already applied have mentioned that a mentor or someone who could help them with their writing would be beneficial to them. Should I say no to them as well? My goal is to be open to different situations, and that’s what I’m doing. If you disagree, that’s fine, but it isn’t your call to make. So, to repeat, once again: I’m not allowing parents to blog without a compelling reason. If a compelling reason presents itself, I & the other bloggers involved will make a judgement call. We can also pass along good applications to Grounded Parents, our parenting sister site. We are losing nothing by allowing people to apply. In fact, literally anyone can apply– anyone can click the link & fill out an application. Whether they’ll be accepted is another story.
To address the other part of your comment, not everyone agrees with you on the “person-first language” issue (it’s a pretty divisive issue, as far as I’ve seen), so I’d ask you not to speak for them. Second, I didn’t want call a 16 year old a child, but calling them a teenager would have been redundant, so I settled for the (admittedly awkward) sentence. For what it’s worth, I’m not a fan of “person-first” language, but I try to respect what people ask for when describing them.
The Autistic community (separate from the autism community, which is primarily parents) tends to prefer identity-first language, like the Deaf and Blind communities, though I admit there are exceptions to that rule.
However: I think you’ve just tipped me off to where the communication breakdown is happening: You think that AAC and a parent writing for their kid is the same thing.
It’s not.
AAC is a thing to help someone who couldn’t communicate in another way communicate.
Parents writing for their kids is parents inserting their interpretation of what they think their kid wants (in the best case scenario, in the worst case, its what they want to hear).
It’s the difference between reading a note I’ve written when I can’t word and telling another person that I don’t mind without bothering to ask.
Addendum to previous, with a note that I did not see this when I posted the post in which I apologized to you for not accounting for your Crohn’s: I’m pretty sure most autistic people (especially part-time AAC users, like me, and full-time AAC users, like some of my friends) wouldn’t have a problem with someone using AAC to post to this blog, through dictation or what have you. Then it’s still the AAC user’s voice being heard, not their caregiver’s. My problem, in particular, is not and has never been with people who need assistance to post writing on this blog, it’s with parents writing in place of people with disabilities on this blog. In the case of a person who needs their parent to assist with parts of the physical act of writing, I wouldn’t have a problem. In the case of parents writing their thoughts/perceptions/opinions of disability, I would have a problem. But I’ve made that abundantly clear with other posts.
Perhaps the vehemence of our reactions to the possibility of the above has taken you aback. I’ll provide some of the necessary context: The disability rights community as a whole is not good to those with cognitive and developmental disabilities. Those with physical disabilities get to speak. Those with chronic illnesses get to speak. Those with mental illnesses get to speak. Those with learning disabilities get to speak. Those with sensory disabilities get to speak. But when it comes time for people with cognitive and developmental disabilities to speak, people tend to shush us and ask our parents to speak instead, to speak for us. This same dynamic takes place across all other parts of our lives – from where we live, where we work, and so on. We are presumed incompetent to speak to our own wants, thoughts, and needs. Get told “hush, now, the grown-ups are talking,” on a several times a day basis for your entire adulthood, and it takes its toll. Have others insist that you don’t mind something you very definitely do mind and act as if you’re in the wrong when you correct them, followed by gaslighting you about your own thoughts and emotions on the subject often enough throughout your life, and it takes its toll. People with cognitive and developmental disabilities are thus used to people silencing us, either intentionally (by explicitly forbidding us to speak) or unintentionally (by inviting parents to speak for us).
On top of that, the autism community has particularly toxic relations between the predominantly-parents-and-researchers eradication camp and the predominantly-autistic identity camp (AKA the Autistic community), above and beyond that seen in most other disability communities. What wouldn’t be an issue at all if you’re dealing with, say, dyslexia or dyspraxia is a huge deal when you’re dealing with autism because of the historical baggage that you and Will are probably ignorant of. The cure camp in the autism community is outright hostile to disabled activists, often attacking with venom anyone who protests, say, ABA on the basis that it gave them PTSD (yes, that is a thing that happens – something I was lucky to escape as I discovered I’m autistic as an adult).
The reason behind that baggage is that autistic people are rarely, if ever, consulted directly on stuff affecting us by the most mainstream autism charities or by the government – and when we are, people still set parent voices above autistic voices in importance, and we’re very often just appointed to token positions for PR purposes. Yes, we’re touchy on the subject. Because we’ve had to be – because that’s the only way we can make sure that the cure activists don’t erase the very existence of autistic people who are happy being autistic. It’s the only way we can make sure that protests against abusive treatments are heard. It’s the only way we can attempt to direct research dollars towards things that will actually make autistic lives better, like effective educational and employment supports and how to do inclusive education right for autistic learners. We are never simply given a seat at the table, we have to take it with a struggle, and once we’ve taken it, we have to cling to it for all we’re worth, lest we get shoved out of it and told to not mind our little heads about it any more.
If you want more context about why it’s such a touchy subject (on par with “rape avoidance tips” in the feminist community, I would say), I’ll second Kaia’s recommendation that people read up on Autistics Speaking Day – the issue of parent voices overwhelming and erasing autistic voices is so big that the autistic community has set up a yearly flashblog to rail against it. It’s necessary context for why we’re so edgy about the parent blogger issue. Also consider reading up on the This is Autism flashblog, which was set up to combat the tragedy model and also is intertwined with the erasure of autistic voices (because the person who triggered it erased even the possibility of Autistic happiness).
Parent bloggers in the autism community talking over/for autistic people, telling us what’s in our best interests and insisting we don’t have a right to comment on things we went through because we’re “too high-functioning” is a major issue involved in how autistic people, in particular, experience ableism. I believe you didn’t realize exactly how much of a hot-button issue it is for us, and exactly how much history there is to unpack there. If you had known, you probably would have been much more explicit from the get-go, I think.
But from my read, it seems that you are saying that people posting with assistance is okay, which I agree with. And I think you’re saying that you wouldn’t allow a non-disabled parent to blog on their own. You would allow them to take dictation or to otherwise facilitate a disabled person’s blogging, but not write their own blog. Is my interpretation correct? I apologize for the hyperanalytical last paragraph of this post – my asthma flareup & resulting pain is making it harder to read for comprehension, and subtext isn’t a thing I do well with on the best of days.
Yeah, I think the debate is…When I first read it, I thought of someone once telling me “Isn’t ‘stupid’ offensive to stupid people?” once as part of his defense of the Washington Redskins. (This after a thread of over 100 pages, 15 posts per page, wrt: the Washington Redskins, where he kept saying such gems as ‘redskin means potatoes’.)
I suspect Skepchick won’t repeat it, mostly because Autism Speaks is everything an advocacy group shouldn’t be, and skeptic groups are aware of it because of AS’s fence-sitting on vaccines. (Vaccines don’t cause autism, and even if they did, they prevent death.)
Evidently I’ve been unclear, sorry. I’m fine with Augmentive and Alternative Communication (AAC). What I’m not fine with is parent bloggers blogging for their kids on a disability blog. The two are rather different things. Ariane of Emma’s Hope Book often transcribes what her daughter writes in AAC sessions. Her daughter is thus able to express thoughts she otherwise would be unable to at this point in her life. That’s fine to me. It’s more than fine – it’s very good.
Parents helping their kids use their own voices is good. Parents presuming to speak for their kids is not.
As well, no, I’m not saying that you folks are being Autism Speaks. Autism Speaks is in its own realm of awful. In D&D terms, if a Plane of Awful existed, it would for me be populated entirely with those who are part of or think like Autism Speaks. While wearing perfume and smoking cigarettes and making feedback squeals with too-bright lighting. Anyway. You’re not as bad as they are, not even close.
I’m writing because I see you doing what a lot of well-meaning but generally CD/DD ignorant people do, which is subconsciously presume incompetence on the part of people with cognitive and developmental disabilities and infantilize us. We don’t need our parents to speak for us. We can speak for ourselves. Don’t ask our parents to speak for us. Ask us. Don’t let our parents speak for us. Let us.
I state again for clarity: I have no problem with parent bloggers writing on the parenting blog. I have a big problem with CD/DD parent bloggers writing on the disability blog, because it plays into an overarching societal pattern of ableism against the cognitive and developmentally disabled.
As the admin for Queereka, the LGBTQ Skepchick sister site, I can absolutely say that this is not true. We do not have a blanket policy about this, and, like Sarah, I would consider it on a case-by-case basis. That writer would probably be better suited for GP than Queereka, but I would not have any problem with them posting relevant material on Queereka.
My point isn’t about policy, it’s about attitude: Cis het people who have even a 101 level knowledge of GBLTQ issues would not presume to write for a queer person, as if the queer person isn’t able to write for hirself. They might lend their voices in support or signal-amplify, but they wouldn’t presume to think they were better-equipped to write or speak about such issues. And nobody would consider an average cis and het parent superior to a queer person in their ability to speak on queer issues.
People think the above about developmentally and cognitively disabled people all the time. And it’s problematic.
I don’t mind parents blogging for the parenting blog. I mind the heck out of them blogging for people with these disabilities if they are not disabled themselves.
An addendum to the previous: There is a reason that “nothing about us without us” has to be a thing in developmental and cognitive disability discussions – that is that people who are developmentally and cognitively disabled are often excluded from discussions on disability and ableism. Case in point: recent autism hearings in the US were held with the only autism representatives being autism parents.
Well, as long as we’re on this topic of correcting attitudes, you should recognize there are cis het people who are queer. We use a broad definition on Queereka that could include cis het people (e.g., if they’re into kink or are polyamorous).
I don’t see how this responds to chemgeek’s point. It wouldn’t be appropriate for those kinky cis het people’s parents to write on their behalf, either. And, as chemgeek points out, the disabled community has a history of being silenced in this particular way (having other people speak “for” them). Doesn’t it make sense that, when trying to appeal to a particular community, one takes their history and concerns into consideration?
I apologize for using an inacurrate term, but your response is a non-sequitur to my actual point. My point was that somebody who is not queer would not presume to speak for queer people. Why is it okay for someone who is not cognitively or developmentally disabled to presume to write for the cognitively and/or developmentally disabled?
A more apt comparison might be whether it would be acceptable to have a man speaking over women. I’m pretty sure nobody here wants that. (Not that I’ve seen bisexual folks being too happy about gays and lesbians discussing them in their absence, either, for that matter. Or anyone else having their situation, life and issues discussed by outsides without their own input.)
Additionally: Especially, why is this okay when, as I and others have stated before, it plays into an overarching pattern of societal ableism? Why is it okay to further the infantilization of the cognitively and developmentally disabled and our forced dependence on neurotypicals? You would not think it’s okay for non-marginalized parents to speak for (not in support of, in place of) any other marginalized population. Why are you still considering letting our parents speak for us (something different entirely from AAC, which I support unreservedly), when people have told you this is an oppressive act?
Have you reached out to anyone in the the cognitive and developmental disability communities for advice? Consider contacting Ollibean. They have a very good track record of helping cognitively and developmentally disabled people speak for ourselves. If you want to do it right, ask them how. Or the Autistic Self Advocacy Network. Or Self-Advocates Becoming Empowered. Or… any of a number of other disability rights organizations that make cognitive and developmentally disabled voices a priority. None of which I’m involved with in any way, by the way, since apparently my not sitting down and shutting up while you consider letting parents speak for me, like damn near everyone else in the universe, has ruffled some feathers.
I support a lot of the work you do here at Skepchick. But unfortunately you as an organization have a bad track record on cognitive and developmental disability ableism. At your highest levels, you have a problem. A big problem. A problem that includes a pattern of gaslighting and abuse to those who call you on your problem, which I and several of my friends were victim to. I am still willing to reach out. Most of them are not. If you want to correct this problem, you need to start listening to people with cognitive and developmental disabilities, and accepting that what we have to say might not include, “You’re doing a wonderful job, don’t change a thing.”
Because the fact is that less than a month ago, your organization published something that included the line “I’m suprised you even remember to breathe.” And when you were called on it, people posted long diatribes defending it and accused critics of being part of a 4chan conspiracy. I have yet to see anyone here even acknowledge that cognitive and disability rights movements are actually a thing, let alone show any sign whatsoever of being willing to reach out and take advice from those who know the most about this particular form of ableism.
Skepchick has a cognitive and developmental disability ableism problem. This is beyond dispute at this point. I’m not trying to attack you – I’m trying to help you fix it. And I’m getting quite aggravated by what I perceive to be stone-walling, a lack of real engagement, and picking off of low-hanging fruit completely irrelevant to my points rather than thoughtful consideration of what I’m trying to say. If you don’t want to listen to me because I’ve pissed you off and haven’t been nice enough, that’s fine. Talk to Ollibean or SABE or ASAN or others who’ve been doing it longer than me and get advice from those who know what they’re doing. Please.
I hate to have to tell you this, but, dear Skepchick network staff: Please check your privilege. You’re engaging in behavior that very much looks like stonewalling and silencing people, specifically people whom you are supposedly trying to give a voice. That’s not cool. Solidarity is not only for neurotypical women.
Which reminds me, Will, I’ve been meaning to say, the word berdache is generally considered offensive, due to its association with Persian boy-slaves used for sexual purposes.
I don’t see what that has to do with this discussion at all.
I saw some of the comments about ableism and some of the responses to your call for disabled writers. I’m just curious as to why the “sister site” approach instead of just searching more people with disabilities to write for the main site and expand your diversity a little that way? There is certainly a place for separate sites, not saying there isn’t. Just wondering how you came to this approach. Thanks!
Someone else asked this question & I responded to it above. :)
The ridiculous notion of letting parents of autistic children speak for them is somewhat cast in a strange light by the fact that today is the Autistic Day of Mourning. Just in January alone, another two autistic people were murdered by their parents.
Perhaps parents of cognitively disabled children/adults would be better served by posting in the general or parenting forum, because no matter how much we think we know what our children want or need, you can never really know for sure. Sometimes it feels like your stumbling from one wrong assumption to the next. Without feedback (or confusing feedback) it can sometimes be a case of elimination until something works.
What I would like to read about from the sidelines however would be a topics like, “stuff my parents/carers/teachers got wrong” (from the perspective of a person who has not been able to communicate while young, but was able to in later life).
The trouble with disabilities is that they are so varied and what works for one won’t for another even if they have the same diagnosis. People are people and the ‘disability label’ detrimentaly tends to ‘oversimplify’ this human condition.
My wife wrote a thoughtful post on the parent blogger subject – certainly more thoughtful than mine above. That post has been sitting in moderation for 3 days.
Is there a technical problem, a lack of moderators, or is there some other issue preventing it from going through?
I have a chronic illness that isn’t at all obvious. I’d love to do what I can to help people understand invisible illnesses and mental illness since I feel a personal connection to those, but I feel like I have a thousand things to learn for each thing I could teach. And I’ve got a whole load of things that help me make my situation incredibly manageable that I know I have a bad habit of taking for granted. So I really hope to read the new content and participate in the comments learning and doing what I can to help.
Hi. I’ve never commented before but I have been a long time reader of Skepchick. I have always enjoyed reading Skepchick but I have recently found it harder to support. I should have acknowledged it at the time (I have social anxiety and find it difficult to speak up sometimes) but in Rebecca’s article on making mistakes last year (http://skepchick.org/2013/06/its-okay-to-make-mistakes-even-about-galileo/ she displayed a screen cap from youtube where she corrected something she had said. What bothered me was that correction included the phrase “herp derp”. I fully expected someone in the comments to correct her usage of the term, but no one did. I cannot tell you how terrible that makes me feel.
Now I come on the site again today (busy life – I sometimes miss stuff) and was so disheartened again to see Amy and Rebecca’s response to the criticism of their Valentine’s Day card. Whether or not you think the phrase “stupid” is an ableist phrase or not (I generally think it is – but I understand that it does not generally evoke the same reaction as “retard” or other words) it was extremely insulting to suggest that anyone who did think it was insulting was part of some 4chan “false flag” operation. In a weird way it cemented why I needed to speak out about my experiences here. My fear of being ostracized for speaking out against ableist language seems to be completely justified. That doesn’t mean that there is a fault with me (something someone with social anxiety have a very difficult time coming to terms with) – that means that their is a fault with this space.
So please learn and change Skepchick. I very much enjoyed being a (mostly silent) part of this community. But hiring a new writer with a disability without apologizing or admitting wrong seems so wrong on so many levels.
At this point, having seen the stonewalling and unwillingness to engage about this subject shown in this commentary alone, I’d advise you to run, not walk, away.
I’ve seen no evidence that my comment would be rejected as you’ve said earlier on this thread. I’m a new member and commenter but my comment was quickly approved although it is clearly not the most flattering for Skepchick. I also understand why those at the site would have mostly wanted to take a step back from the issue for now. This site feels like a family where sometimes when you fight you can say harsher things to each other than any stranger can because you know them well enough to hit them where it hurts.
That being said, a lot has been written about this so far and I’m still very new to all of it. I just reached the end of the comment section where Rebecca defends the use of the word on the site (somewhat tenuously) and it clearly wasn’t her best moment (not really going to bring up specifics again). I just brought up my complaint about her use of the term “herp derp” (I’m assuming I’m the first to do so) so I’m still hopeful that she may recognize the harm from that phrase (if her or others defend that phrase I’m afraid there is little chance of me ever feeling welcomed at this site again) and also may consider that there may be a possible problem of ableism on this site. And honestly, that is not an uncommon thing. I’ve never been anywhere without some form of ableism being present. It is probably always going to be around in some form or another. I think the difference is just in how people respond to it that makes me feel either welcome or not.
Thank you for your advice. I really do appreciate it considering I’m new to commenting. I’m in no way rejecting the response you’ve gotten – just relating my own experience so far. Always subject to change. Always willing to listen.
At this point, it’s been days since we’ve had word of any kind from Sarah, or from any Skepchick staff member. The word we got then was equivalent to a blank stare when complaints were aired. I am not hopeful at this point.
That you can remain free of cynicism speaks well of you.
They may be avoiding the conversation for the same reason I have – they disagree very strongly but don’t want to hurt people who have already been grossly marginalized.
I could just be projecting, though.
What “word” are you waiting on from Sarah or any of the rest of us, exactly? This is a post putting out a call for writers for a new site, not a rehash of any issues raised in previous posts.
I find it so odd that you’re here telling other people to run away and yet you keep coming back to post. If you hate it here so much, why do you stick around?
If we wanted to silence people, do you think your comments in this thread would be visible? Do you think any of the comments on other threads that anyone disagreed with would be visible? I mean, come on. I’ve just checked and there are no comments in moderation, so if your wife saved a copy of her post, she could try to post it again. But the commenting policy on Skepchick is to let through comments even if we disagree with them as long as they are generally respectful and not obviously trolling.
And I will only speak for myself when I say that I agree with punchdrunk’s assessment below, though other Skepchick writers may not.
Could it possibly be that since I have a very serious disability, I haven’t been feeling up to posting at all for the past few days? I mean, you care so much about people with disabilities, so surely you considered that, right?
Punchdrunk: What part is it you disagree so strongly with, then? The part where people don’t want their parents speaking for and over them? The part where people with non-physical disabilities want their own voice? Or what is it?
Will: Some word on whether parents will be allowed to speak over the people with the actual disabilities will be good. So far the expression I’ve seen is that they will. That means this wont be a disability blog, it will be a some disabilities blog. It will not be any kind of safe space for most neurodivergent people, especially not autistic people. Wrt. the moderation query I made, it took 3 days. It was approved a couple days before your post was made.
Sarah: You are not the only person involved with moderation, I hope. That said, fair enough – but your comments as yet show a good deal of ignorance of other disabilities than your own, and if you’re going to be running this sort of blog, that needs fixing something fierce.
To all of you: Why are you responding to me, and not for example, chemgeek or Kaia up above? They’re making much better points than I ever could, and yet… tumbleweeds.
But Sarah, the fact of the matter is that you’ve taken on a responsibility, and then gone days without responding to *actually disabled people* who have real concerns about how this blog is going to be. You in fact have *still* not responded to me, an actually autistic woman, over a matter I consider of extreme importance. It is in fact a life and death matter, literally; because of people and organizations that speak over and for us, 40 autistic people have been killed by their caretakers or parents in just 5 years. Many of them were just small children.
If you think I’m the only one who feels the way I do, you’re very wrong, and you shouldn’t be running this blog, because you just don’t have enough understanding of disabilities other than your own. I know all about not feeling up to responding. I have fibromyalgia. There are days where I’m in so much pain that I’d probably put a bullet through my brain if it wouldn’t hurt too much to pull the trigger. But if anyone ever felt concern on my own blog that I was allowing allistic voices to speak over autistic ones, I would not let it pass for days on end, regardless of my pain. I am trying to tell you something very important, something to keep Skepchick’s disability blog from making the same ableism mistakes the main blog has made, and all I’ve gotten so far is the impression that no one cares to listen. As a blogger, don’t you want to feel that the site you’re blogging for has your back? Or maybe you’ve been lucky enough not to receive abuse for blogging about your disability, but those of us who blog about cognitive or developmental disabilities often receive heaps of it. You ask for disabled bloggers, but then you give no indication that they’ll be safe or supported if they work for you, and that’s not a good way to start.
And Will, it was my post that sat in the moderation queue for three days. It might say March 1st, but it most certainly was not posted then. As to why my husband is still here, I expect the reason is twofold: 1. He’s here on my behalf, because this has pissed him off for my sake. He’s seen the abuse and gaslighting I’ve suffered, he knows what I’ve been through, how much I’ve struggled with self-hatred because of all the ignorance and misconceptions about autism. I’ve shown him the numbers, the stories, shared with him all the things my fellow autistics have gone through, and he does not care for the impression of disinterest he’s gotten here because 2. he loves Skepchick. He was in fact that one that thought I should apply. It’s upsetting to him to see *no one* on the staff of the blog actually care about a very real ableism issue, especially on a blog that is meant to be about disability. It’s eroding his faith in the site in general, and I don’t blame him.
Because, Will, if you think for a second you have any right to disagree about a disability with the ones who *actually have it* you are so dead wrong. That seems to be the entire problem here, privilege and a sense of entitlement that you get to speak over disabled people, that you get to disagree with them on what is harmful to them, and you don’t. And if that is what this site is going to be, I’d rather know sooner than later. Because I want nothing to do with such a site and I want to make sure that the people I care about, the nearly thousand people who have come to follow my blog, know that this will absolutely *not* be a safe place for them and that they shouldn’t remotely consider it an example of good representation for disabled people in the skeptic community.
This is the problem. You and your husband keep making this accusation on a post calling for writers to start a new section of Skepchick dedicated to PWDs. To sit here and repeatedly make the accusation that no one on this site cares about ableism is beyond the pale.
The fact that people see things differently than you and your husband and that people disagree or are not answering you on demand does not mean no one here cares. Further, why would any of us want to engage with people who have already dismissed us as uncaring and people they encourage others to “run away from”? Do you not think Sarah’s time is better spent engaging with people who want to work with her to make a positive difference rather than keep rehashing stuff over and over because they’re not getting exactly the response they want?
First, how do you know I don’t have a disability? I did not engage at all in the previous threads on this topic. You are making assumptions about me because I have disagreed with people in this thread. How about you stop making assumptions about others?
Able-bodied people can certainly disagree with PWDs. Being a PWD does not give one a magical pass to make any sort of claim about anything and be unchallenged. Of course people’s experiences of marginalization shouldn’t be questioned or challenged. If there is language that is harmful to people, I generally try to avoid using them. Obviously you know your own experiences better than anyone else, but that does not mean everyone has to agree with the broader conclusions you draw from those experiences–especially when other PWDs disagree as well. PWDs disagree all the time about the very topics being discussed/argued about on Skepchick recently, and that’s part of the issue. Many PWDs are trying to speak up on behalf of all PWDs rather than from their own perspectives. You yourself have done it in this thread, speaking for your “fellow autistics.” Why don’t you let them speak for themselves, and you speak for yourself? While you lecture (presumed) able-bodied people that they do not have the right to speak for PWDs, why don’t you take your own advice and speak for yourself and stop trying to be THE voice for PWDs?
Especially in a thread that is a call for writers for a blog that will be run by a woman with a disability. You and your husband have repeatedly erased her disability in this thread, and you have the nerve to complain that the site she will be running may not be a safe space?? Perhaps you should recognize how your actions in this thread have made it not so safe for others.
Will, you are the one who is beyond the pale. First of all, *I* have done nothing repeatedly. I wrote *one* post (that, again, sat in the queue for three days) stating my concerns and even linking to a blog that would provide more information. No one responded to that at all, and still no one has. I have in fact done nothing except try to inform you of the fact that inviting parents to blog here on behalf of autistic children would be a huge mistake, and *even now* you have yet to address that concern. Not agreeing with me is not an excuse, it’s a deflecting tactic.
You act privileged, Will. You act like someone who has no experience with being a developmentally disabled person who is constantly talked over by all and sundry. If you don’t want people thinking you’re not disabled, stop talking like you have the privilege to go through your every day without people all around you telling you that you’re not normal, not right, not useful, not *human*.
Again, I have done *nothing* repeatedly. I have asked, *twice*, for my very real concerns to be addressed and instead I have only been ignored. Why are we not allowed to ask questions about how this blog will go? We’re not allowed to know what will be happening here until it smacks us in the face? If any of you care about ableism, why are we not allowed to express concerns about the very ableist thing that happened right at the beginning of this post? Is that all this blog is going to be? You people sitting here with your fingers in your ears, going “la-la-la” when real people ask you real questions? And speaking of erasing disabilities, you have done *nothing* but act like *mine* doesn’t matter, so I don’t think you get to talk.
I have NEVER acted like THE voice for disabled people here. Not even for autistic people. In fact, I linked to a site very specifically called Autistics Speaking Day. Autistics fucking Speaking Day, Will, and no one has even acknowledged that I’ve done so. NO ONE. But fine, you want to know what other autistics think about this? I’ll see what I can do. Though I hate to expose them to this bullshit.
Sarah, since you can’t be bothered to even acknowledge the fact that I have a real concern here, consider my application withdrawn. I have absolutely no desire to work with someone who cares so little.
Will, for a skeptic you are engaging in some seriously lazy and irrational thinking here. You erect an army of straw men and add in ad hominem attacks on both of us, when the evidence of this very discussion board is clear. The facts on the ground are, unless you are autistic, or have approached learning about autism from a standpoint of humility and knowledge seeking, you probably think you know all about it, and know in fact nothing at all. The same is true of a number of other neurodivergences, disorders, mental illnesses and other disabilities concerning the brain. A skeptic and critical thinker should not accept anything less than the best information as evidence – and yet here you are dismissing the words of someone actually autistic on the subject of autism.
That evidence shows that the parent blogging issue, a major, major issue for neuroatypical people generally and for autistics in specific (don’t take my word for it either – try and see what you find when looking for autistic people blogging on the subject for instance), has not in the slightest been engaged with since the first few posts, where the impression was given that this new blog would allow parents to speak over their children, and over people with actual disabilities. That is indicative of a massive problem, and, as I mentioned, one that has not been engaged with at all (apart from where Sarah erected this horrible straw man example which has no relationship with reality whatever, but I wouldn’t say that counts).
As for Sarahs disability, are you saying we should coddle her? That she can’t deal with things herself, answer questions, administrate the blog? That seems to be to do her a disservice. I may not be impressed with her understanding of the problem space, but I expect she can learn, and doesn’t need to be swaddled in cotton wool.
To both Sarah and Will: would it have been so difficult for Will or someone not dealing with disability issues to say, “We need a few days before we can respond to that concern.”? That way it didn’t seem like stone-walling, and your privacy would be protected?
The fact is, radio silence is something the oppressors do a lot to autistic people. We won’t acknowledge that until you ask nicely enough or are humble enough or ask via telephone orally and articulately enough (something that many autistic people, myself included, have great difficulty with due to auditory processing issues). Or, my worst enemy, ask “appropriately,” where what exactly is “appropriate” is never defined and the goalposts of it seem to constantly be in flux.
I’m willing to presume good faith, given the new information. Please understand that, to understand that to bystanders in the autism community, several days of complete radio silence looks just like medical professionals stonewalling us on referrals, like government officials stonewalling on benefit appeals, or like teachers stonewalling on whether or not they’ll grant accommodations. etc. If they never respond to us, they can just pretend we fell through the cracks when we are unable to succeed and blame us for not asking in the “right” way when they never told us the rules in the first place. As a result, stonewalling is something many autistic people (me included) are very sensitive to.
I apologize for jumping to the worst conclusion. It was a jump that is not at all unreasonable given my life experience and the context of this conversation both here at Skepchick and in mainstream autism advocacy movement (where parent voices are seen as superior to autistic voices, both in terms of understanding “what autism is like” and in terms of knowing what’s best for autistic people), and given how people with cognitive and developmental disabilities end up at the bottom of the heirarchy of disability, I had little reason to assume that Sarah being disabled herself would improve matters on the cognitive and developmental disability ableism front. If I’d had the luxury of extending the benefit of the doubt, I would have, but for analogous reasons to what Ian Cromwell has written on racism and the benefit of the doubt, I didn’t feel safe to at the time.
To Sarah in particular: I have moderate asthma and am currently dealing with a flare-up that caused pulled muscles and a sternum bruise yesterday and am debating whether I can afford to stay home sick today. I understand of how disruptive chronic illness can be to one’s life and energy levels, even if I have no idea what it’s like to have Crohn’s. I apologize that I didn’t allow for a flare-up as a possibility in my posts, and I hope it resolves as quickly and smoothly as possible.
Please answer our concerns about parent bloggers on the developmental and cognitive disability front when you’re feeling up to it.
Will:
This is an unfair and hurtful accusation. These people are engaging with you exactly because they want to make a positive difference. They are TRYING to work with you (the plural you).
First, this is incredibly weaselly. You’re trying to sow doubt instead of actually addressing the issue.
Second, people who have a certain kind of disability (cognitive and/or developmental) are telling you that they are concerned about how issues relating to that kind of disability will be handled. Since not all disabilities are treated identically, this is a valid concern.
Third, the lack of response to these issues communicates a message. I know the people who frequent this site are not completely ignorant about that sort of messaging, so it seems pointedly curious that there are issues raised in this comment thread that have been ignored. If these issues are being discussed behind the scenes somewhere, which would be perfectly understandable, it would be helpful to say so. Of course, it would be even more helpful to have that conversation in the open where the people who will be affected by those choices can participate in it.
And if the idea is only to discuss these issues with participants in this new site, it might be worth keeping in mind that people who are trying to decide whether or not to apply will be reading this conversation.
Wow. Did you really just use this many words to tell her to shut up? If a bunch of cishet people were discussing GSM issues and a queer person chimed in to point out some concerns that the relevant community expressed with some regularity, how would you imagine this same quote would be received?
This is disgusting. I’ve seen enough of what you’ve written to expect you to be better than this.
Atochton and Kaia: you are awful. Just seriously awful. Saying things like, “where the impression was given that this new blog would allow parents to speak over their children, and over people with actual disabilities” when what happened was that someone asked “what about a parent of one (or more) disabled/autistic children. Can they apply?” and Sarah responded “Hi Nancy! That’s a good question– I’d say apply & we’ll figure it out from there. :)” is the very height of hyperbole and assuming the worst. I’m glad that Kaia at least had the sense to withdraw the application, but you really needn’t have bothered since there’s no way in hell I’d allow someone so disrespectful, reactionary, and ignorant to write for this network.
I’ve tried to ignore this thread because I want this project to be Sarah’s, but from now on I’ll try to keep a better eye on it so that I can ban you the next time you post something ridiculous, and thereby turn your absurd whining that you’re not being allowed to raise criticism into a self-fulfilling prophecy.
@ Kaia Sonderby
I said you AND your husband.
No one has responded to your particular post. That’s because Sarah had already addressed your concerns in responses to other commenters. How many times does she need to repeat herself? Also, I don’t know why your comment sat in moderation, I was not monitoring the comments at the time. There are any number of reasons it could have sat there. Sometimes we are hesitant to approve comments in other people’s posts, and it could have just been that others were leaving it for Sarah to approve and respond to. But I don’t know if that’s what happened or not. Anyway, I’m sorry your comment sat in moderation for so long–I do know how frustrating it can be for that to happen.
That being said, I wish you would stop assuming the worst about our motivations and immediately jumping to conspiracy theories that we were trying to silence you for days beforehand.
Sarah has already addressed that concern in this thread. She essentially agrees with you and has explained what, if any, capacity she would bring on a parent to blog.
Are you fucking kidding me? You think you can tell all of that about me by reading four comments I’ve written on this post? You don’t know shit about me. Cut it out.
Really? Even when you say things like, “I’ve shown him the numbers, the stories, shared with him all the things my fellow autistics have gone through”? How is that not supposed to come across as speaking for all people with autism?
@Autochton
Oh, really? Please, show me specifically in this thread where I have done this.
I’m not dismissing her words. I’m disagreeing with some of the conclusions she’s drawing about the motivations of the people who write for Skepchick and your’s and her’s repeatedly ignoring Sarah’s clarification in this thread just because she hasn’t responded specifically to either of you. You do realize that the PWD blog is not JUST about autism, do you not? And, again, please stop making assumptions about whether or not I have a cognitive disability.
If that impression you read into it, Sarah clarified what she meant (and it’s not that). You and your wife have simply ignored that clarification.
That’s complete horseshit.
@chemgeek
First of all, why should I have responded with that? I’m not even involved in the new sister site, and I’m certainly not going to speak on Sarah’s behalf like that. And do you seriously think a response like that would have gone over well?
And, the thing is, Sarah did not need a few days to respond to that concern. She responded with a clarification to YOUR COMMENT on March 1 only a few hours after you posted it. I just simply cannot understand why you all pretend like that comment isn’t up there for everyone to see.
The thing is, I doubt anyone here disagrees with you at all. But this has been way more drama than it needed to be because many people are just talking past Sarah and ignoring the things she’s already said in the thread. I can’t speak for Sarah, but I do understand that many of the initial responses were totally reasonable. It’s this continuing insistence that no response has been given that is so frustrating.
She already has.
Look at her comment in response to you on March 1 at 11:42 a.m.
Look at her comment in response to Kaia on March 6 at 7:45 p.m. (which you responded to)
In another comment, you said this:
You are correct. That is the position of the new blog.
Will: I explained why you or someone else should have posted something of the sort in the same sentence, and I elaborated further in another comment: So it doesn’t seem like stonewalling. So that we feel our concerns are heard. So that we don’t feel ignored. Because we’re not psychic. And because several says of radio silence due to illness is indistinguishable from several days of “Maybe if we just shut up they’ll go away and we won’t have to deal with them.” without some indication that a response will be forthcoming. I’m not saying it would’ve had to be you. Or Sarah, for that matter. But someone should have.
As to whether she responded on March 1st: She did not explicitly disallow the possibility of parent bloggers blogging on their own here in that comment. Combined with her response to nancygraz and given what I’ve elaborated elsewhere in this thread about how people with cognitive and developmental disabilities and autistic people in particular are hushed when it’s time for us to speak, I misinterpreted it. Subtext and implications are not things I do well. They never have been. That’s part of my disability. If I hadn’t been coming down with an asthma flare and stressed from meatspace stuff, I might have been able to read into it what she intended to say, but maybe not. I am a person who routinely lost all marks on symbolism questions in high school English, and who only mastered the concepts behind simile and metaphor in 12th grade. I have literally ridden my bicycle headfirst into a shed wall because someone told me to “ride into the shed and stop” and the door was shut so I assumed they meant for me to ride into the wall of the shed. I don’t tell you that for laughs, but to show you how my brain is. I am bad at realizing other people have different knowledge than I do – I failed to realize the other person didn’t know the door was shut, and I failed to realize that you and Sarah might not know what a hard time I have with subtext and implication. Because of how my mind is, I need people to be literal and explicit with me. Even if it seems obvious what someone meant to you, it might not be to me. Kaia, for her part, might be in the same boat as me, since it’s extremely common for autistic people to have trouble parsing subtext and implication.
In any event, I interpreted her comment on the 1st as the possibility of parent bloggers blogging on their own being unanswered because it wasn’t answered explicitly, and because she hadn’t asked nancygraz for clarification and/or stated that except in rare cases of parents assisting PWD, she didn’t want parent bloggers.
Likewise, I interpreted her comment on the 6th as being similarly ambiguous, when I found it and read it (after I posted the post you’ve responded to, as I noted at the beginning of that comment). That is why I asked for clarification. You might think it’s obvious what she meant there. I honestly couldn’t tell for certain. Subtext: I suck at it. Aside from dogwhistles that I’ve had to recognize out of necessity and certain social rules on my social situations flow charts, I tend to take people’s words at face value because I have great difficulty reading beyond face value. This difficulty increases when I’m sick, as I have been the past week. I reiterate: It might be obvious to you and Sarah what she meant. It was not at all obvious to me. Unless it’s incredibly obvious, or there’s some external indicator (like sarcasm tags) that there’s another layer of meaning, something stated through subtext or implication is likely to be something I won’t receive.
I am relieved to hear that this was a misunderstanding. I would like you both to consider in the future that perhaps if someone appears to not be listening to what you said, they literally aren’t receiving the meaning of your statements because of how you’ve phrased it. Perhaps your statement is cognitively inaccessible. I am autistic. I cannot do subtext and implication like most people can. And it so happens that this blowup occurred in a week where I do it even worse than normal because I’m sick. You kept saying it had already been answered. I kept saying it hadn’t because, since it had been answered in subtext and implication, not in explicit statement, it was answered in language cognitively inaccessible to me. It’s only today, after you pointed out the comment on the 1st, that I can maybe see what you were talking about when you kept insisting it had already been answered. But if you were to give me the same statement out of context again? I would probably come up with exactly the same interpretation of it: That the writer doesn’t want PWD excluded, full stop. Nothing about non-disabled parent bloggers. Nothing to address my concern on that front.
Will: I should add that I find the way in which you’ve lumped Kaia and Autochton together as a single entity in your posts to be problematic. It reeks of intersectional ableism and sexism. Kaia is her own person. You should be treating their actions separately. If you had a problem with Autochton, you should have been snarling at him, not at Kaia. She is not responsible for her partner’s actions. Given that you lashed out at her for things Autochton mostly did, you shouldn’t be surprised that she responded in kind.
Furthermore, snarling at people (me and Kaia) who have a disability that affects language and communication for being unable to parse cognitively-inaccessible responses isn’t really on, either. Kaia and I have pretty much bent over backwards to explain our concerns to you, and you kept lecturing us on how we needed to “re-read” responses that obviously didn’t put the matter to rest for us. Given that we’ve both disclosed disabilities that affect language and communication, I would think you would want to entertain the notion that your language was cognitively-inaccessable to us. I cannot speak for Kaia, but Sarah’s responses certainly were for me, given what she apparently meant by them.
Autochron and Kaia: I think you both should give Sarah more consideration for her chronic illness. Spoon depletion is a real thing, and it’s ableist to pretend that someone should just be able to bootstrap themself past it. I can’t bootstrap myself past my autism when faced with cognitively-inaccessible language. I can’t bootstrap past a migraine when I also need to study. I can’t bootstrap myself past asthma when someone’s asking me to start running without a slow warmup first. Is it so unreasonable that Sarah can’t bootstrap herself past her illness during a flareup? We should be careful that, when protesting ableism in one form, we don’t perpetuate it in another.
Autochton: There’s a lot going on in this conversation, and your comment just happened to be the point at which I jumped in. I agree that parents of children with disabilities should be blogging at Grounded Parents.
I don’t know how to disagree without being blunt and (potentially) hurtful. I think balancing presumed competence with recognizing limitations and vulnerabilities is a tricky thing. I think that the Euphemism Treadmill is condescending. I think that people with disabilities absolutely do not agree about what constitutes slurs or ableist speech, with some really obvious exceptions. I think the common experiences of abuse have left a lot of bruises and open wounds, and sometimes it just feels like a bunch of walking wounded flailing at each other.
I’m aggravated at people who seem to want to take my struggles and use them as an excuse to play Protector of the Helpless and Word Police. And I’m aggravated that I don’t feel like I can say that without being accused of friendly fire.
I am disabled. People keep suggesting that I apply and I’m interested, but I’m also religious. Should I apply?
(To clarify, I am a critical thinker. I’m not sure whether this site is expressly atheist or agnostic or if people of faith are welcome too.)
People of faith are welcomed here but if you use that faith to support a bad position expect to be called on it.
Whilst I applaud your epiphany that people who have disability don’t have much of a voice, I don’t get why it needs to be a separate/’sister’/segregative (in essence) site, for most of us achieving ‘ordinary’ citizen status is unattainable when actions like this set the whole disability movement back to ‘us’ and ‘them’ mentality… Why can’t it just be one improved site, not 2 sites – one for the the ‘disabled’ and one for the ‘abled’ … Does not promote inclusion, justice, or equality, but highlights differences…
Lisa, your question has been addressed repeatedly above. Skepchick is a network of websites, with several focusing on specific issues– we have a parenting blog, a blog for LGBT people, a blog for teens, one for educators, plus several different language sites. We do weekly roundups of posts on the sister sites & post them on Skepchick main, not to mention the sidebars of recent posts on the sister sites. The reasoning behind a sister site is that way we can get more in depth in the issues– someone who reads the disability blog will probably have more than 101 knowledge on the issues, so we won’t need to explain the same concepts that we would probably need to explain on Skepchick’s main site.
We already have several people with disabilities blogging for the main Skepchick blog, and you can see some of those at the bottom of my post (they’re the “related posts”).
if you are looking for disabled voices but think it’s okay to also let abled people speak for us as well you are NOT accomplishing your goal.
i am autistic and i do not want parents, guardians, etc speaking for me.
we deserve OUR voices to be heard.
not to mention: it is often parents and guardians who are some of the most awful, ignorant and cruel to disabled folks.
SOLIDARITY IS NOT JUST FOR NEUROTYPICAL PEOPLE. please let us speak for ourselves.
The fact that giving abled parents of disabled kids a voice was even considered is a huge red flag. We need fewer stories from abled parents about their experiences parenting disabled children and more about disabled parents who are raising children. We need more stories of disabled adults living our own lives. The premise of this new site is good, but goodness, the comment section has really really made me think twice about applying.
Having sympathy for a parent in a difficult situation? Considering giving them a voice? Literally worse than Hitler.
@delphi_ote
People have sympathy for the parents even when the parents have abused, abandoned, neglected, and even murdered their children. ‘Awful, but understandable’ is a very common response.
That’s why this is such a sore spot.
And having sympathy for murdering, abusing, abandoning, and neglecting parents was exactly what Sarah proposed, so this response was entirely proportional.
Non-disabled parents already totally dominate popular discourse about autism in particular and developmental and cognitive disability in general. Exactly how much more of a voice do they need to have? All of the talking room?
This is an important point, and I think it’s important to re-iterate one last time that the new blog will NOT be giving voices to parents of children with disabilities.
Please, to everyone, re-read Sarah’s responses to these concerns earlier in the thread. These fears of parents being given voices that silence their children on the new blog are unfounded. That will simply not happen there. And if it were, you can be damn sure I’d be there screaming about it along with you if it did.
Thank you for an explicit answer that I can point people to, Will. By the way: That first sentence is how you do cognitively-accessible language for me.
I’m not disabled, but I do suffer from a severe chronic illness. If I wanted to submit something would this blog be the best to do so? Or would it better on a main blog? I don’t want to offend anyone.
I apologize if this isn’t the place for me to say this, but I’m honestly not sure where that place is…
To Chemgeek, Kaia, and Autochon : I’m neurotypical so I don’t really have a voice in this conversation, but I wanted you to know that I see exactly why you needed to keep asking the same question again and again. You didn’t get a definitive answer until the end of Will’s post ( March 8th, 12:54am), on an issue that you were trying to explain was a VERY BIG DEAL to a lot of autistic people. The response you got, whatever its actual intent was, also came across as dismissive and stonewalling to me in many places.
The problem with the valentine, and the subsequent post defending the use of the word “stupid”, opened my eyes to an aspect of ableism that I’m sorry to say had never occurred to me before – the developmental disabilty side of it. In my opinion, Skepchick ( a site I LOVE, btw) has for the most part handled this issue very, very badly. I just wanted you to know that there are lurkers like me who have been paying attention to what you say, and trying to be better.
Seconded, I will never use the “what are you stupid?” argument again. Something I never thought of before this discussion, it has entered my conciseness and I now see it everywhere the same i did when cultural appropriation and fat-shaming were pointed out to me.
I’m sorry, I just have to disagree that there wasn’t a definitive answer before. I totally get chemgeek saying it was hard to pick up on it in Sarah’s responses and that something extremely explicit would have been helpful in their case. But Sarah literally said ” I am not going to accept parents as bloggers without a compelling reason, as I’ve previously mentioned.” And her previous mention was that she would consider parent applicants in the cases of facilitating communication. She clarified that very early on. If you want to fault her for not being explicit enough for some people to pick up on it, fine. But please stop repeating the myth that she did not clarify her position with a definitive answer to the question of whether parents would be allowed to blog on behalf of their children with disabilities.
I would also appreciate if people would stop making Skepchick a monolith hivemind. Skepchick itself has not handled anything, it is a blog network with a lot of writers, many of whom are PWDs. By monolithizing Skepchick, you are erasing the PWDs that write for this network, many of whom did not even engage in the discussions that happened around Valentine’s day. Criticize specific people’s specific responses rather than painting everyone who writes for the Skepchick network with the same broad strokes (though this thread isn’t really the place for that).
Will, I understand what you are saying and we do disagree on the existence of a definitive answer prior to your March 8th post. The inclusion of the phrase “without a compelling reason” makes it unclear (again, in my opinion). I think it is reasonable for a concerned developmentally disabled person to be suspicious of what a “compelling reason” may be to Sarah, especially given the way that the whole valentine situation unfolded (even though Sarah had no part in those conversations). I understand that she gave the example of a daughter who dictated messages to her mom, but to my reading she did not give any assurances that parents would NOT be “given voices that silence their children”, as you put it, and so did not actually definitively address the concerns being written about in such detail.
As to Skepchick not being a hive mind, that is a fair point and I will try to be more clear about my meaning going forward. Rebecca is (in my eyes anyway) sort of “the face” of Skepchick, which I think is why I made that mistake. The way that she, and the other writers at Skepchick who agreed with her, doubled down and defended the use of the word “stupid” in the comments of her post on that topic was very, very badly done in my opinion. There are plenty of writers for Skepchick who were not a part of that, but with the exception of Grimalkin (and I think a post on TeenSkepchick?) I haven’t seen anyone else associated with the network step forward and say that they disagree. If I missed that, please set me straight! I also haven’t seen an apology or a retraction from the people involved, which I was kind of hoping may happen over time after tempers had cooled and some more thought was given to the subject. All of this combined makes ME, who does not even have a horse in this race above general concern for SJ issues, feel that this is not really a very safe space for developmentally disabled people. Again, if I have missed others speaking up, please let me know!
Sorry I didn’t respond sooner, I forgot to come back to this thread and check for replies and got caught up in other threads. FYI, Anna voiced her disagreement on Queereka on February 17th. And, interestingly, one of the Queereka writers with disabilities spoke up in disagreement with Anna and she is seemingly in agreement with Rebecca’s call to not ban the word “stupid” from use on this network. The thread pretty much died out without much discussion.
You are right, the post wasn’t on TeenSkepchick, it was Queereka.
“Do you not think Sarah’s time is better spent engaging with people who want to work with her to make a positive difference rather than keep rehashing stuff over and over because they’re not getting exactly the response they want? ”
They are trying to make a positive difference, just not through coddling feels. The concerns they are expressing are virtually unilateral throughout the autistic community, with the same intensity as they are being expressed here. And for the record, Rebecca calling them “Awful” for telling you all their concerns without being sufficiently… nice? And continuing to be concerned when they have no reason to feel the situation is fixed? Is both hypocritical and, when you factor in that she threatened to ban them for it, very much an abuse of power. Seriously. This is me trying to make a positive difference, because you all should be better than this. Be better.
But if that doesn’t convince you that Sarah isn’t just listening to those trying to make a “positive” difference… I reached out to Sarah and offered my help when I was informed that the disabled community was doubting her intentions and actions. I was informed of that because I was being blamed for it, because apparently being angry and skeptical mid-panic attack on facebook turned the entire community against her. But regardless of the fact that I was being demonized, I still offered her help. Because… at this point, none of the disabled community is going to trust a non-involved person who is doing something as a reaction to what they are very dismissively terming a “kerfuffle”, and that’s without the fact that they have very many concerns that are not being adequately dealt with. Unless, of course, somebody that they have reason to trust is working on making it right. And, for the record, I like to think I understand the disabled community. I know what we want and what we won’t accept. I know how to make my community trust this one.
But it isn’t by telling me to retract my concerns on facebook (which were couched with “But I’m still applying as a writer” so how that can even be seen as overtly negative…) and then refusing to even speak to me about the issue further. Which is what happened. So I don’t buy “only interacting with those who want to make a positive change.”
And, regarding those outstanding concerns? We don’t want a “case by case basis” on parent’s speaking for their kids. We want a straight up No. We don’t want “but there are other sister sites,” we want why this- and for the record, queerness- needs to have its own site, when there aren’t sites for people of color or class or such. (we see sister sites as something tangentially related- like parenting or being a teen- or that necessitate a separate site- other languages. We have yet to see a convincing argument for why the intersections of feminism should be separated) And that, is coming from the point of view of someone who likes the idea of a sister site. I’ve just been listening to the concerns of those who Do Not. The overwhelming majority of the community would rather this problem be fixed by including more disabled feminists (including cognitive and developmental) on the main site. We are a community very often pushed off into our own sector in a very “Separate but equal” fashion, and we tend to fight for streamlining.
Oh. And we ALL still want to know that the network doesn’t consider us some 4chan initiative (which apparently has been in the making since before the internet) before we’ll take anything done to “Fix things” seriously.
Who is ‘we’ and who is ‘the disabled community’ you’re speaking for?
I’m not on Facebook or Twitter, so I’m probably missing part of the conversation.
I made a comment on May 5th. I was hoping my concerns could be addressed in some way. I realized quite early on that this thread may not have been a great place for me to raise my concerns as it was not all entirely on topic. I filled out a contact form to raise my concerns the next day. I have yet to receive a response. All the while, it seems Rebecca still had time to come and comment on other commenter’s posts. Where may I go to voice my concerns and have them addressed?
I just did a search for your username “couldbesun” on the Skepchick backchannel history and nothing turned up. So unless you sent it under a different name, it never came through. We get a ton of comments sent in every day, so it’s entirely possible that whatever you sent in was overlooked, especially at peak times like when this issue was going on and we had an increased volume of email.
Sounds like fun.
I have ADHD and Tourette’s Syndrome. I’ll apply.
TW: Lots of ableism from parents of children with Autism. ABA therapy, curbies, abuse, spanking
I’ve been reading the comments, and I think what needs to be done is making it clearer why parents shouldn’t be participating in a blog for disabled voices and why. I have Asperger’s Syndrome and my main knowledge is of goings on in the Autism community. In my experience, I have had parents of children with Autism bully me, suggest that I have no idea how to help their child, or if I do offer help that I’m just some smart mouthed brat who wants to overthrow their position as a parent. I have heard of parents advocating ABA therapy, telling me how wonderful it is how their children now have been tortured into functioning well enough to participate in mainstream classes in school. Parents who have gotten me removed from Autism communities for daring to challenge them, and their curbie points of view. Parents telling me putting their child in a state of mind breaking terror is what is best for them. Telling me who has sensory issues, how punishing Autistic children with spankings, spraying water in their face, ect has cured them. We’re talking about things that not only betray the safety of people with Autism, but their relationship to reality. It doesn’t take much to overwhelm someone with Autism to a point they feel the only way to cope is dissociation. They are told behaviors they can’t help are their fault. Convinced something is wrong with who they are. They are told to be silent when they see parents doing things to their Autistic children that would have damaged them so completely they would be unable to do anything but cry, and cry, and cry. That would put them in such fear they could not sleep, that even the thought of experiencing something that reminded them of the event would make them want to run away faster than a Blade Runner. Parents doing things to their children that would make someone with Autism want to scream and scream endlessly, but they don’t. In fact many Autistic people find hiding their emotions a crucial means to survival. We do not need parents advocating abuses of Autistic children for their own good here. We do not need to hear how we’re naughty Auties, and had only someone taught us by punishing us with painful aversives, we’d know where our place is. How dare we speak out while other Autistic children can’t, and how dare we speak on behalf of those children being tormented who do not have the ability to scream stop, because we don’t know how bad it is, we don’t know how desperately they need to be tortured into normalcy. How many more children must suffer behaving neurotypical out of the most basic survival instinct for visceral fear of what happens if they don’t. It is abuse when it happens to neurotypical children, it is for our own good that we learn from an early age to accept and understand emotional and physical abuse is what we need to be whole. Being told our realities are faulty, convinced it’s our fault for not being heard, never knowing what we did so wrong to deserve such punishment.
Being told you cannot go home until you perform a task that is impossible for you, we’d arrest parents who did this to neurotypical children. Yet teachers have done this to special needs students, forcing them to choose between a fear of punishment, and a need for safety. This happened to me in the 3rd grade, and I still remember it at 31 years old. No child should have to be put into such a level of fear, to feel they’re being held hostage, kidnapped from their home in 3rd grade. It’s okay though, because I was cognitively disabled. I was going to learn to write that paper, or I was was not going home. I viscerally feared detention from that point on, I’d imagine I’d show them, I’d scream and scream and SCREAMMM! They would have to let me out! Does this sound like what you’d expect to hear from a child who had been kidnapped like Elizabeth Smart? Should any child have to feel such fear of being kept from a place they felt safe, that they had fantasies of how they’d escape just to keep themselves from being in complete terror? To think the only way people will hear you is to scream, and we all know that doesn’t work either, it just gets you locked in a padded room. I’ve read news stories about classes with those, I advise you don’t Google them. I was a child so filled with fear of punishment, being kept from my parents, all because I was neurodiverse. There are parents who will tell you this was for my own good, and had I not been put in such fear that now I have diagnosed PTSD, I’d be one of those Autistic children who couldn’t speak, and wouldn’t life be worse then? Let me state for the record here, I take Zoloft for PTSD and depression, I was so depressed at being emotionally abused, forced to participate in work I couldn’t understand or finish, humiliated by teachers and students, and threatened with hostage taking if I didn’t obey. I don’t care if it’s only an hour, it’s the idea a child cannot go to their home at the end of the day. It’s natural to have a instinctive fear of separation from your parents as a kid, it’s a blinkin’ survival instinct!
This is why we don’t want parents voices here. I didn’t even get into the issues regarding Autism Speaks advocates, and how it’s like inviting Nazis to a Jewish forum with the way they just love to talk about how we’d be better off having never been born, and that we should be eugenically removed from the human species. How we’re discussing an organization that thinks instead of giving money to help Autistic people, it’s better to be used to program a Kinect interactive kiosk showing how upsetting it is for the parents when their kids don’t look at them. It’s really more like Coddle Coddle the Poor Parents of Autistic Children instead of Autism Speaks.
We do not need this on a site for disabled people. We do not need the insight of parents who want their foot in the door to pass their Autism Speaks propaganda, and cry about how hard it is for them. They can do this through the voice of their children, and don’t think they won’t. I wouldn’t put it past them to write in their child’s “voice” about “I wish I wasn’t Autistic, it makes mommy and daddy sad.” They will do anything for attention, and they will do anything to gain pity. Not all parents of Autistic children, but the ones who wouldn’t do this would respect that this is supposed to be a place for people with disabilities. We don’t need parents who will encourage campaigns to have the true voices of Autistic children heard, claiming those of us who can communicate aren’t truly Autistic. I have never met a person as manipulative as martyr parents of children with Autism. They have absolutely no conscience about who they hurt if it means they get to be the center of attention, the martyr mommy, the one on the block who gets the sad looks and the statements of how amazing they are. Frankly, it’s not that different from parents who gain attention through Munchausen by Proxy.
So those are my thoughts on this. You can be as mad as you want if it was too frank, if I hurt the parents fee-fees. After all, it’s not new to us that our feelings come second to theirs, always.
It sucks that you’ve been bullied by parents in that particularly community, but this is a totally, completely different community of people. I’m not sure why you are assuming that one community of parents is going to be the same as a completely different community of parents.
You’re basically saying: “Some parents have been jerks to me. Therefore parents shouldn’t speak.” It’s not a logical consideration. It’s very knee-jerk.
It’s a legitimate concern. Skeptics are going to have to be willing to stand toe-to-toe with woe-is-me parents. It’s really, really, really common for us to hear those stories, and then hear the justifications — it’s brutal. And constant.
Nobody’s served by hearing what a burden they are and how saintly the people they(we) live with are for not abandoning us to homelessness and institutionalization. Gratitude in the face of abuse. That’s what’s often expected.
It’s a real and painful issue.
The more I think about this — I can’t handle another comment section telling a parent how *strong* and *brave* they are. How dealing with a disabled child must be *terrible* and however do you do it!?
How *strong* and *amazing* parents must be to… what? Not smother us at birth? Not abandon us to the system?
How abuses are just desperate people doing what they think is best, and we should be more understanding.
Our scars are nothing, their burdens are enormous, their mistakes always, always understandable. Because we’re so fucked up they had to do it. For your own good.
It’s a deep well here.
I have more confidence that Skepchick won’t let that happen, but it happens all the time, and it’s not an invented fear.
I don’t think it’s an invented fear at all. But there are plenty of important subjects to be discussed, and we shouldn’t not have them because some assholes exist. Plenty of parents DESERVE a voice.
I get that it’s a legitimate concern, but we have a pretty good record (at least HERE, I’m not talking about the entire Skeptic movement) of standing up to people.
But we shouldn’t preemptively silent all discussion because some parents are assholes.
So does that mean there will be a zero tolerance policy parents advocating for Autism Speaks, dehumanizing us, shutting us down, calling us burdens, telling us what is for our own good will be banned forever. With no drama, no asking the victim of their abuse to forgive them, to understand? If you cannot guarantee this you are not ready to have parents participate here.
Also how dare you call my post knee jerk, WE HAVE LIVED THROUGH THIS ALL OF OUR LIVES! Oh, go ahead though, go and say how my perspective of the issue is illogical. I’m sure that really will endear trust amongst those disabled here, that it’s illogical to give a voice to the abuse we’ve endured. In fact, since you care so damn much about the silencing of parents, maybe we should all just abandon here and go back to our blogs. What kind of disability community puts the issue of silencing parents above actual disabled people?
You do not have a good record here. This thread was started because the owners of Skepchick decided to make a disability site of theirs a place for parents as well as disabled people, and then react as if it’s ridiculous disabled people should have a problem with that. I point out to you EXACTLY why it’s a problem, and you tell me it’s illogical. Right, really says good things about a disability community trying to start up calling a person with a form of Autism illogical. Oh, I must be out of my mind, only a *ableist slur* would think parents could be harmful. In fact I’m sure Kassiane Sibley would like to have some words with you just about how harmful parents can be. I’ll be sure to send her a link, to further educate you on why you giving parents a voice, and claiming how oppressed and silenced they are, with the hundreds and thousands of parent communities on the net ready to receive them and their boo hooing over having an Autistic or disabled child is wrong.
You’re off to a very bad start, a very…bad…start.
As a man with Asperger’s Syndrome, I agree with Jackie Rose. She has articulated my concerns as well.
Would I say it is possible, in some possible community, for parents of children with autism to contribute positively? I would. But Skepchick has shown itself to not be that community. Don’t get me wrong, I think you are good people who genuinely want equality for all. I’d be hard pressed to find a group of people with more pure intentions. But on this subject, I do not trust your judgement. I do not trust you to differentiate between parents who would be good for this site, and those who would not. And in the event of one of these parent bloggers posting something we would find to be deeply offensive, harmful, or downright wrong, I do not trust you to take our concerns seriously.
I hope there is a zero tolerance policy! I fully believe there should be. That said, I do think you’d be surprised that most people here agree with you fully. I apologize for the knee-jerk comment; you are correct in your response to that. So I apologize and don’t blame you at all for your reaction to me.
I’ve been ’round these parts for a while, though, and what I”m trying to say is that I think nearly everyone here is going to be on your same page, and that even if some autism speaks people squeak on through, they won’t last long, and will be appropriately dealt with, very quickly and efficiently.
Also, btw, when I said “those parents DESERVE a voice” I was speaking about people like YOU. Not the autism speak jerks. Just to make that clear.
That’s not at all what happened. It’s easy to go back up and read this thread and see that that’s not what happened.
What happened was one person asked that question, Sarah gave a vague answer saying she wouldn’t reject that person’s application out of hand but would see what it was about. When the issue was raised how that could be highly problematic, Sarah clarified herself, stating that she would not consider allowing parents to blog on behalf of their children with disabilities, but only in the role of communication facilitation. Others felt that Sarah’s statement was not clear enough, but it has since been clarified repeatedly that it was never the intention to invite on parents to write on behalf of their disabled children, nor will that be happening on the new site at all. Sarah will, in fact, direct those people’s applications to the parenting sister site.
The thing is, many of the complaints voiced are quite valid and important. But when people keep repeating the lie that there was an intention on the part of anyone at Skepchick to bring on those kinds of parent bloggers on the disability site, it gets really frustrating when that’s already been addressed repeatedly and makes people not want to engage on the comments anymore because it feels like no one is actually listening to what’s being said.
If people do not trust the new sister site before writers have even been brought on or it’s even started, that’s unfortunate. But I’m sure those of you who want nothing to do with Skepchick or the new sister site will find another place to congregate and talk if you do not want to be here. Or, you can stick around and help make sure that space is the best it can be. That’s entirely up to you. But it’s seriously getting really old to have to repeat over and over that there will not be any parents of disabled children blogging on behalf of their disabled children on the new sister site. Those concerns were unfounded, arose out of a miscommunication, and have been blown out of proportion (granted, for understandable reasons). I hope that now that it has, once again, been clearly stated that that’s not the intention nor the case, we can move past that particular issue.
Thanks for the clarification will, I was a little confused, too.
Let me also clarify: I did not mean that the concerns were unfounded in general. I meant that they were unfounded strictly in regards to the new sister site. I acknowledge and agree that those concerns are valid and quite serious otherwise.
I have to point out that marilove did not call the post knee-jerk. They called the specific characterization of all parents of autistic parents as being unable to represent their children knee-jerk. They did NOT deny your personal experience. They denied that your personal experience can be mapped to every parent of a person with autism.
I’m still undecided myself. If a parent can demonstrate that they are systematically doing the best to they can to be true to what their child is conveying, and doing all they can to remove themselves from the message, I would be happy with that. Sure that is a high standard to meet, but I refuse to pretend that it’s impossible. That sort of thinking is too black and white to my taste.
That was what I was trying to convey, yes, and also what Will said (particularly in his clarification to bring home the point). Although I do think I should have avoided the phrase “knee-jerk reaction” — I don’t like it myself and I really should have used better, more concise language to convey what I was trying to say.
It seems counter-intuitive to me to refuse to have the discussion at all. It’ll just mean that the unreasonable voice are getting all of the time and attention, and the more reasonable voices are not being heard at all. That doesn’t seem an appropriate way to handle the autism speaks movement. Push back is important, and that can’t happen if we can’t have the discussion at all. And Skepchick seems to be a great place to have that discussion.
I don’t think anyone here has said that their personal experience can be mapped to EVERY parent of an autistic child, that seems like a disingenuous argument to me. What they seem to be saying is that there is an ongoing issue with a large group of able parents speaking FOR their autistic children and using that power to justify abuse. If this is a known issue and many in the autistic community are taking the time to very eloquently explain to us why it is a serious problem for them, why do you seem to think that autistic people should not have the final say in what will make this a welcoming space for autistic people on a sister site that is supposed to be FOR people with disabilities?
It has been said by multiple people that parents of autistic children should be free to post on the Parenting blog, so no one is asking for them to be silenced. I am simply hearing many asking for a safe space to make THEIR voices heard and tell their own stories in a world that generally doesn’t treat them as though they are worth listening to.
I truly do not understand your objection to this.
What about disabilities that have nothing to do with autism? And I don’t personally view autism as an automatic disability. And yet all people are focusing on is autism.
No one is objecting to the example Sarah gave in which a disabled daughter who was unable to type dictated her own words to her mother. I’m not seeing anyone here trying to police other types of disabilities. I’m seeing a very specific reaction to the idea that able parents may be allowed to speak for their autistic children on a site FOR disabled people (*which we have cleared up will NOT be allowed*) because this is a problem that hurts many autistic people.
I think the main focus has been on autism because there was so much miscommunication early on, and now we still have people jumping in and saying things like “If a parent can demonstrate that they are systematically doing the best to they can to be true to what their child is conveying, and doing all they can to remove themselves from the message, I would be happy with that.”
I think statements like that WILDLY miss the point, again if we care about prioritizing marginalized people’s voices.
As to autism not being an automatic disability, I am so far from an expert on autism that I don’t even feel comfortable commenting on that, except to say that I would defer to how an autistic person chooses to label themselves in this discussion. I think they are in the best position to tell me if they are disabled or not, and I am certainly not going to either force that label on someone who doesn’t want it OR strip it away from them if they identify with it.
I was specifically responding to how Jackie Rose responded to marilove.
marilove’s comment was paraphrasing that Jackie Rose was using their personal experience to say that no parents should be representing their autistic children.
*”You’re basically saying: “Some parents have been jerks to me. Therefore parents shouldn’t speak.” It’s not a logical consideration. It’s very knee-jerk.”
This seems a reasonable paraphrase to me given the post marilove was responding to. It contained,
*”I think what needs to be done is making it clearer why parents shouldn’t be participating in a blog for disabled voices and why.”
Followed by nothing but personal experiences and a later conclusion of,
*”This is why we don’t want parents voices here.”
It is reasonable for me to conclude that they want parents to not be included based on their personal experiences. And yes this includes their experiences of what they see other parents do as well because it’s also reasonable for me to wonder if they selectively remember bad (it’s a very common human flaw we all have) examples and miss good parents that do the best to they can to be true to what their child is conveying, and do all they can to remove themselves from the message. It’s far less likely that all parents of autistic persons are unable to do this.
Let me be clear here. I believe that everything that Jackie Rose said happened, I believe that they really feel the way that they do. But I don’t have a reason to believe every set of parents of autistic children are like that, and Jackie’s comments strongly suggests that they feel this way because they leave very little room for anything else. I came to the same impression as marilove as well. If Jackie tells me that I am wrong about what is a reasonable conclusion based on the evidence above, I have no problem accepting that they feel differently and will change my opinion on what they believe.
I would be fair to have a high standard of evidence and to challenge any potential set of parents. It already looks like there is a really good set of potential challengers here with a great selection of what troubling patterns look like. You can all be an asset to such a thing. I see no reason to exclude such parents simply because it’s not necessary since there is a parenting blog. That makes not sense because they would be conveying the words and meaning of someone who is not a parent, and in fact precisely the sort of person they want to write here. Maybe that set of parents is one in a million, but I would not count them out.
That may be how you read the situation. Just be aware that it is a documentdd concern in many areas of social justice where the voices of well-meaning allies are allowed to drown out the voices of the marginalised. It happens in feminist spaces when well-meaning men (like me) talk over women, it happens in queer and trans spaces, and it happens in spaces meant to be safe for those with disabilities. It’s a special concern for the disabled because many disabiluties already raise the difficulty in being heard. This is not a case of cognitive bias, and implying it is could be interpreted as a silencing tactic.
@quietmarc
*”Just be aware that it is a documentdd concern in many areas of social justice where the voices of well-meaning allies are allowed to drown out the voices of the marginalised.”
I’m aware of that. This is precisely why I added,
*” If Jackie tells me that I am wrong about what is a reasonable conclusion based on the evidence above, I have no problem accepting that they feel differently and will change my opinion on what they believe.”
I am familiar with attempts to silence people. It’s also why I suggested that some of the folks here can act as a great filter for potential parents. I don’t want to silence anyone, but neither do I want to give up the perfectly human behavior of drawing rational and correctable inferences.
*”This is not a case of cognitive bias, and implying it is could be interpreted as a silencing tactic.”
And I was careful to leave ways to prevent that from being a silencing tactic as I stated above. Also it is reasonable to ask about cognitive bias examples like this as long as one has a standard of evidence that can be met (as I always try to have). Remember the post on the controversy about ablist terms where someone thought that maybe 4chan was up to no good? That was a similar example. Based on past examples of troll interference someone’s filter was mistakenly tripped and an exploration of a possible cognitive bias would have been warranted. It was reasonable to wonder, but only as long as the person with the filter has a standard of evidence.
I’m a feminist friendly moderator of a discussion board in a community that is indirectly associated with 4chan. I run into this all the time and have had to get very practiced in these sorts of biases.
@Joshua White
NO, it is not reasonable to read Jackie Rose’s post and come away with the idea that what she is saying is that her personal experiences can be mapped to EVERY parent of a person with autism. It is not a reasonable paraphrase. Allow me to quote from the post in question, as you did:
“They will do anything for attention, and they will do anything to gain pity. Not all parents of Autistic children, but the ones who wouldn’t do this would respect that this is supposed to be a place for people with disabilities.”
I can’t find a way to type this question without sort of sounding like a jerk, so I want to say that it isn’t my intent. I am genuinely curious and would like to know your answer. Have you taken the time to read all the comments here? Jackie Rose is far from the only person in the autistic community who has written at great length and detail to try to explain what the problem with able parents speaking for autistic children is. Her post is not the only one that has a lot of pain behind it, and yet she (and others) STILL manage to clearly state that they don’t think EVERY parent of an autistic child does these things.
If you haven’t read the entire comments section, I want to strongly encourage you to. If you HAVE read everything, if you have read post after post by person after person putting themselves out there, in spite of the pain the topic causes them, to try to get those of us who have the privilege of NOT having to deal with that crap to understand what it’s like to live it, and you still think that the appropriate response is to question the “cognitive bias” of those individuals… then you are not being a good ally.
Here’s where you are wildly missing the point: No one is arguing that it is impossible to find a parent of an autistic child who would try to be a voice for that child in good faith, and maybe even do a good job of it. That parent may well exist. And that parent can write on the PARENTING site and their perspective would be welcome. If we are interested in creating a safe space (meaning a space where they feel they can speak without risk of silencing or gaslighting) for a group of systemically marginalized people we have to prioritize THEM.
We have to listen, and if a group of POC say “you know, the general dialog happening all around me is centered on the white perspective. I need a place where MY perspective is central to feel comfortable talking, because if I’m told that I’m [playing the victim/being oversensitive/sounding too strident] one more time, my head is going to explode!” we need to respect that. The appropriate response is NOT: “You think every white person is racist, but white people aren’t all like that! Good white people should have an equal voice there too!” It is okay to create a place where white people are not given voice… we have all the voice pretty much everywhere else! Yes, even though there are good, caring, insightful white people in the world. If they really are that caring and insightful, they should be able to respect that the space was created for POC without feeling the need to insert themselves into it.
Ditto with women, ditto with LGBTQ, ditto with disabled people, ditto with any group of people that typically doesn’t have a voice in the mainstream conversation.
This sister site is not for everyone’s issues, it is specifically for people with disabilities. I ask you again: why do you seem to think that autistic people should not have the final say in what will make this a welcoming space for autistic people on a sister site that is supposed to be FOR people with disabilities? Who would you rather make comfortable here? Able parents of autistic children, or autistic people themselves?
(*It has already been clearly stated that able parents of autistic children will NOT be allowed speak for their children here*)
I just realized that in my last post I made the assumption that Jackie Rose is female, even though I have no way of knowing what gender they are. I apologize! I need to be more careful with my pronouns!
Last point first.
*”(*It has already been clearly stated that able parents of autistic children will NOT be allowed speak for their children here*)”
I’m interested in discussing the issue because I like discussing issues. I have not encountered this one and I would like to have had the experience for the next time that I encounter it since I spend a lot of my time with the psychology and neurobiology of different forms of disability. More context is always helpful. Otherwise I have no problems accepting that this is the site policy. If the moderators think the discussion is too disruptive I have no problems backing off. I am not trying to be hostile, but I am challenging ideas and deliberately leaving places to have my mind changed.
*”NO, it is not reasonable to read Jackie Rose’s post and come away with the idea that…”
You are not addressing my point and I still disagree that it is an unreasonable inference.
When I say it looks like Jackie is mapping their experiences to every parent of autism, I am saying that it looks like they are claiming that no parents can represent their children neutrally because of a large set of examples of parents behaving badly. “Mapped to their experiences” refers to a specific set of things that you did not mention. Set of bad experiences =/= parents should not have the opportunity to represent neutrally as a logical conclusion. I want to know if this is because they think that no parents can neutrally represent and I stated my reasons.
That quote actually seems to support my inference. Either there are parents that want attention for themselves, or there are parents that would not try to represent their children here. I still think there could be a third group. Parents that are “…good parents that do the best to they can to be true to what their child is conveying, and do all they can to remove themselves from the message.”
*”I can’t find a way to type this question without sort of sounding like a jerk…”
Don’t worry about it. My Tourette’s partially manifests as something of a difficulty in being political with disagreement (we do worse on something called the “faux pas” test), so I won’t take challenge personally. I’m better than I used to be but I can still come off as tossing comments into a dissection tray. I have gone around the internet bashing around for Tourette’s so it would be hypocritical if I could not take some of it with respect to autism. My autistic friends would be disappointed in me otherwise.
*”Have you taken the time to read all the comments here? Jackie Rose is far from…”
I have read all the comments here. Again, I am not saying that she thinks that every parent does the set of terrible things, I am saying that it looks like she thinks that no parent can neutrally represent their children because of her experience of those things. Inference. She can change my mind with one sentence.
*”If you haven’t read the entire comments section, I want to strongly encourage you…”
I have read it. Neither am I using a discussion about a possible bias as a means to silence anyone’s expression of pain. It just happens to be that the pain is directly relevant to the pattern that I want to confirm the existence of. I am curious about if the pain has caused a person to see all parents of autistics as unable to do a specific thing. My mind can be changes with a single answer from the person.
*”Here’s where you are wildly missing the point: No one is arguing that it is impossible to find a parent of an autistic child…”
First, if Jackie is not arguing that, they can tell me. I specifically left room for that. I’m still not convinced that they don’t believe this because of their comments.
Second if a parent could be found that could neutrally represent the child, it would not really be the parent talking. It would be the child so no, the parenting site would not be appropriate because you would in fact be shoving that child’s voice off to the parenting blog. Your words implicitly demonstrate that you believe the parent’s voice is there, not the child’s. Hence your desire to ship them off to the parent’s blog.
*”We have to listen, and if a group of POC say “you know, the general dialog happening all around me is centered on the white perspective. I need a place…”
I’m sorry but disability is a very different area from the others when it comes to that sort of voice in very specific areas. No white person needs to be the voice of a person of color. No LGBTQ needs to have a different person representing them.
I can agree that that same emotion to have one own voice alone present will still be there, but there are likely some autistic individuals with disability out there that might need some assistance transferring their voice to the internet so it will be impossible for those individuals. The issue of bias is a considerable one, I totally agree with that. But again, I’m not going to believe that there are no parents out there that can’t represent their children’s voices neutrally without more than all those other bad experiences. Especially when any potential child with essentially parental dictation would have folks such as yourselves that can work with them to make sure everything is fine, and probably bloggers with autism as well (unless these individuals don’t have a standard of evidence for such parents).
*”This sister site is not for everyone’s issues, it is specifically for people with disabilities…”
You paraphrase me thus,
*”…why do you seem to think that autistic people should not have the final say in what will make this a welcoming space for autistic people on a sister site that is supposed to be FOR people with disabilities?”
If you are going to ask me what I think, refer to my real words if you can not paraphrase me accurately. I’m interested in finding out if Jackie (and anyone else if they want to say so) thinks that there are no parents that can neutrally represent an autistic child that would need assistance in blogging. I want to know if they think there are no parents that can be “…good parents that do the best to they can to be true to what their child is conveying, and do all they can to remove themselves from the message.”
Because if those parents exist, this is not a parent writing on the site anymore. In my mind this is functionally the child. The autistic person themselves because they are essentially taking dictation, or as close to it as one can realistically manage which directly has to do with if people think it’s even possible.
To be completely clear, if autistic individuals think that no set of parents can represent them, that is a valuable thing for me to know. Maybe I can accept that you think that these neutral parents exist silverfeather13 (though I mentioned the inconsistencies above). Are you autistic? That is important for the way your opinion fits into my mind.
@Joshua White
Because it’s a good idea to lead with: (*It has already been clearly stated that able parents of autistic children will NOT be allowed speak for their children*)
* “Are you autistic? That is important for the way your opinion fits into my mind.”
I am not autistic. I am a woman, but other than that I occupy a place of relative privilege in most SJ conversations. That is why I was trying to find out if you had read every comment here, because to my reading many people in the autistic community have been expressing themselves very clearly and I wanted you to see their words.
*”First, if Jackie is not arguing that, they can tell me…”
I see that you have said this multiple times, so let me explain why I jumped in. At the end of Jackie Rose’s last post they said: “This is really all I have to say about this, because despite usually having decent control of my emotions, this has made me very sad. It has brought up a lot of bad memories, and I just want no one else to have to go through what I went through. I’m not the only one who is afraid. You don’t know these people like we do, they will destroy souls and break angels if it means they get to parent their disabled child harshly and get support for it.” I read that, and I felt could relate to it. I hit that level of emotional exhaustion when I have been trying to explain some aspect of my lived experience of being a woman to some Well Meaning™ man who insists on trying to intellectualize my experience instead of listening to me. Which, I’m sorry, in my opinion is what you are doing, even if that is not your intent. I run out of emotional fortitude very quickly when I am talking about MY LIFE and, instead of listening with empathy, they are happily trying to debate some abstract concept to which they have no emotional connection.
*”I’m sorry but disability is a very different area from the others when it comes to that sort of voice in very specific areas…”
Okay, I can accept that there is some difference there, and I freely admit I am no expert on that topic. Here is a member of the autistic community’s thoughts on that… chemgeek says: “The disability rights community as a whole is not good to those with cognitive and developmental disabilities. Those with physical disabilities get to speak. Those with chronic illnesses get to speak. Those with mental illnesses get to speak. Those with learning disabilities get to speak. Those with sensory disabilities get to speak. But when it comes time for people with cognitive and developmental disabilities to speak, people tend to shush us and ask our parents to speak instead, to speak for us. This same dynamic takes place across all other parts of our lives – from where we live, where we work, and so on. We are presumed incompetent to speak to our own wants, thoughts, and needs. Get told “hush, now, the grown-ups are talking,” on a several times a day basis for your entire adulthood, and it takes its toll. Have others insist that you don’t mind something you very definitely do mind and act as if you’re in the wrong when you correct them, followed by gaslighting you about your own thoughts and emotions on the subject often enough throughout your life, and it takes its toll. People with cognitive and developmental disabilities are thus used to people silencing us, either intentionally (by explicitly forbidding us to speak) or unintentionally (by inviting parents to speak for us). ”
There are different challenges within every marginalized community. I am still going to defer to the group of people we are actually talking ABOUT when it comes to what is going to make them comfortable. I feel like you’re talking around my point here.
The crux of your issue seems to be here: “…if a parent could be found that could neutrally represent the child, it would not really be the parent talking. It would be the child so no, the parenting site would not be appropriate because you would in fact be shoving that child’s voice off to the parenting blog.” I am not even going to try to put my own answer here. Instead I’m going to quote some self identified members of the autistic community because they are the ones we should be listening to.
-chemgeek : “You think that AAC and a parent writing for their kid is the same thing.It’s not. AAC is a thing to help someone who couldn’t communicate in another way communicate. Parents writing for their kids is parents inserting their interpretation of what they think their kid wants (in the best case scenario, in the worst case, its what they want to hear). ”
– kaia sonderby: “I think your scenario of a 16-year-old autistic person (please understand that many of us despise “person first” language) who needs their parent(s)’ help to write their ideas down is highly unlikely, and allowing parents to apply for them would be inviting enormous problems.”
“As I mentioned, the scenario you paint is a highly unlikely one. In this day and age, many of us, of all different ages, are already on the internet and it is fact fairly common to see us writing. Opening the door to parents who are pretending to speak on behalf of their children is, I think, a far bigger disaster than the small chance of missing a person or two who might have had some good ideas.”
– antichthon: “Would I say it is possible, in some possible community, for parents of children with autism to contribute positively? I would. But Skepchick has shown itself to not be that community. Don’t get me wrong, I think you are good people who genuinely want equality for all. I’d be hard pressed to find a group of people with more pure intentions. But on this subject, I do not trust your judgement. I do not trust you to differentiate between parents who would be good for this site, and those who would not. And in the event of one of these parent bloggers posting something we would find to be deeply offensive, harmful, or downright wrong, I do not trust you to take our concerns seriously.”
– Jackie Rose: “I don’t have a problem with parents of disabled kids, I have a problem with the ones who are skilled at avoiding detection from the mods. You can’t police the site 24/7, or check out every single comment. It only would take one instance of “I taught my child to not stim by taking their PC away.” to cause someone to have a meltdown or go into a depression. I don’t think you or the mods here know just how fragile the community you’re attempting to support is about this. How deep the wounds they have are, and how easy it is to open them back up again. I just don’t want my friends to be hurt again, because a self-righteous parent waltzes in and posts some horrific screed and escapes the mods before people have been broken again.”
I think the answer to your question (and the implications of your question) is here. If you don’t see it, I don’t think there is anything more that I can say to get it across.
Even though the issue has been decided I have been trying engage with you for two reasons. One, as an able person of privilege in this conversation, I’m not really subject to the emotional fatigue on this topic that I was talking about earlier, and I wanted to try to amplify the voices of the people who may be hurting, and sick of trying to rehash this over and over. Two, I think that you do not have ill intent in this conversation. However, I DO think that you are missing the point, and I think that you are not really listening with empathy to the people who are affected by this day in and day out.
This is likely my last post. Unless some new point comes to light in your reply we have each stated our cases. I don’t want to continue to say the same things over and over, and you are welcome to the final word.
@silverfeather13
This is a general post about me. I need to get some extra context out first because there are other issues that are relevant to our dialog that I have been trying to figure out how to fit in. I am unsure of being able to mix the two issues together without making it look like I was minimizing my own role in the issues, or picking on anyone in particular. I’m responding to your comment in the next post.
*********************
After the first couple of exchanges on this issue I decided that I needed to bring up an issue that there may be no delicate way to bring up and this is as good a time as any.
A community of cognitively impaired individuals in a blogging community is going to have unique features that need to addressed head on with an eye towards preparation and understanding if nothing else. We have strengths and weaknesses when it comes to a wide range of cognitive features that involve how we interact with society, information, language, perception, interactions, and things like reasoning skills which get us to the realms of logical fallacies and motivated reasoning. I absolutely INCLUDE myself in this statement. Since my diagnosis a whole bunch of puzzle pieces have fallen into place in my life when it comes to these issues and will be no avoiding it when it comes to day-to-day interactions and conflicts. To demonstrate this I will start with my challenges as a person with Tourette’s Syndrome and ADHD and then extend the discussion more generally.
The stereotype of Tourette’s Syndrome and ADHD is well known enough that I really don’t need to go into it. The reality is something that I have spent the better part of 5 years educating myself about since my diagnosis, even down to binging on neurobiology and psychology articles. I have been extremely fortunate that I chose to pursue a career in the biological sciences as well as experience in gaining skills rational skepticism (as opposed to rational-less hyperskepticism) and logical reasoning through involvement in the whole creationism/evolution debate. Those experiences have served to strengthen my cognitive weaknesses, though I do not claim any perfection and always try to leave room for others to demonstrate where I am wrong or flawed in some manner.
When you meet a person with TS, you are talking to a person who is under the pressure of powerful internal urges to do certain things and act in certain ways, generally from around the age of 7. These would be the various tics and other behaviors that worsen with stressful situations, and can disappear when we are totally focused on things we love to do. The term tossed around to describe the nature of the sensation is unvoluntary. The study of the systems involved in TS leave me comfortable summarizing the situation as a kind of invasion of one’s sensory systems by the motor systems because of a lack of inhibitory control that results in the appearance of Habits and Urges in consciousness unbidden by perception, and unwanted. Because consciousness is essentially built by what is called sensory-motor integration throughout one’s life, this inhibitory issue warps lots of areas of motor and social development.
During childhood a kid with TS commonly has problems controlling intense emotion, and as an example rage attacks are a common complaint. But as we grow up most of us (but not all) gain the ability to control ourselves and our responses through compensatory mechanisms in other cognitive systems and so people with TS don’t have unusual criminal records as a group. But the years of taking a beating from extremely intense emotion does take a toll and the sensation of our feelings being intense never really goes away so in addition to interesting improvements in some systems, there are many cognitive deficits. A good way of describing it for myself is that I am very emotionally simple, intense, deliberately hyper-analytical to compensate for cognitive imprecision (like a “myopia”), and I know that I am missing other things. This leads to certain characteristics (not an exhaustive list).
*I already mentioned doing badly on the “Faux pas test” and part of how this works out involved problems attributing intentions accurately. This essentially means that I am more prone to embarrassing social mistakes that have also been called non-obscene socially inappropriate symptoms. This stems from more general problems in theory of mind from what might be difficulties in inhibiting our personal frame of reference. These include problems recognizing emotional states in facial expressions, understanding of false belief (understanding that a person can be mistaken about something we know), reasoning about socially conflicting emotions, and competitive emotions.
*We score lower for extroversion, conscientiousness, emotional stability, and openness. Additionally anxiety, impulsivity, personality disorders, and oppositional defiant disorder are common.
*We have problems understanding non-literal language.
*We have problems with executive function.
*We have unconventional responses to humor.
All the different cognitive disorders had their own associated lists of issues such as these.
What does all of this have to do with blogging and arguing in general? People under stress are prone to disordered patterns of thought like black-and-white thinking, filtering, overgeneralizations and others. I honestly believe that the whole “this is coming from 4chan” thing was a result of this (and I don’t blame them from suspecting, they just should have done a follow up), and when I see lots of black and white statements my own filters will be on as well. People with cognitive deficits often experience a lot of difficulty in interacting with others and stress related to the specific areas of deficit of thought can involve disordered thought patterns. My family is very prone to impulsive thinking and “spot the logical fallacy” is something I can do on Facebook to a depressing extent. I had to work really hard to deal with such thinking myself and I’m sure I still do it from time to time. Doing a Google search for TS or autism and some of these disordered patterns of thought like “black and white thinking” turn up a lot of relevant hits. This is not a thing that can just be casually dismissed for normal folks, let alone folks like me.
This does not mean that any particular person is engaging in disordered thinking, but it does mean that if one thinks that they might be seeing some black-and-white thinking and similar, it’s not irrational to check. As long as the person checking has a standard of evidence that can be met there should be no harm in checking. These are general human flaws that are more likely to show up in people with cognitive disorders because of associated life stress and decreased abilities in specific parts of cognition. Any community that wants to deal with issues related to mental disability will touch on these problems at some point.
Now that I have that out of the way let me explain why I am taking the approach that I am. When I try to understand someone else’s point of view I don’t interact with the content the same way as you. I often have to spend extra time and effort to determine intention, logic, and reasoning in order to understand why a person has the opinion that they do regardless of the intensity of feelings. If I can’t get certain information I have a hard time being on the same page in a lot of ways. That’s just the way that it is and I do what I can to be correctable and open to information at every step.
*”I see that you have said this multiple times, so let me explain why I jumped in…”
I can respect that you saw a pattern that you are sensitive to and felt compelled to come to someone’s aid. That actually describes how I came into this discussion as well. And guess what? I’m also experiencing some emotional exhaustion from this exchange, I did not get really good sleep thinking about it. And guess what else? I HAVE to intellectualize this to varying extents precisely because of the way that my mind is shaped and that is not the same as intellectualizing and not listening. One can intellectualize and listen and I still don’t see that I was not listening. This is a general issue that any cognitive disability community faces, especially when individuals with different issues interact with one another with their own abilities and tolerances. I doubt that you think that people that have to intellectualize where they have problems connecting should be excluded, so you may want to add a little more information to your picture of me before you judge so quickly. I’m actually working really hard here.
I completely accepted the fact that Jackie felt the way that they did about their experiences. Are you trying to say that it was not appropriate for me to try to understand if Jackie believed that no parents could neutrally represent their parents and why? Because that is a relevant thing to want to understand in the context of the subject of this blog post, especially when I made efforts to show that my inference was easily correctable. I get the impression that unless all I do is talk about what the other person said and nothing else you will be unhappy. But I hoping that this impression is just a mental exaggeration from my issues involving intentions so I ask, can you give me specific things that I should have done in addition to what I was doing? (“In addition” because I still don’t believe that I should have not tried to learn the things that I was trying to learn). Because just saying that I don’t look like I am listening is not enough for me.
*”Okay, I can accept that there is some difference there…”
I’m part of that community in a general sense. I have similar experiences to everyone that you quoted. Within the last year I have had people try to ignore or tell me that I did not really feel the things that I did (something that I have not done here). I also did read those comments and understood them. What I tried to do was to get Jackie to tell me if they had specific views about parents of children with autism for specific reasons, after I pointed out something true about marilove’s comment. There was no ignoring or denial of what they already said, and I was asking for more of what they believed, not less. I wanted clarification. Asking for a confirmation or a denial of something is not ignoring or denial of what one believes.
*”The crux of your issue seems to be here: “…if a parent could…”
I saw these comments. I started by addressing a particular persons comments and expected that a conversation might come from my tangent from that into the issue in general. Any of them can chime in and talk too. I see some denials that parents that can neutrally represent their children exist, and some ambivalence. The person with autism that I know on Skype was ambivalent as well. I was hoping that eventually I could get into the reasons for why they had these beliefs with someone (I only started with a comment from Jackie) but at this point after having you question everything I have been doing, I’m kind of tired of the subject for the next couple of days. The only person with autism that I have talked to I went out of my way to contact myself, and they don’t seem to think that I ignore or deny their views.
*”Even though the issue has been decided I have been trying …”
I’m not going to respond to this last bit until you have seen what I have posted already, now that you know more about me.
@Joshua White
First of all, I want to thank you for taking the time to share all of that. It really does help me to put into perspective some aspects of our exchange that have been really frustrating for me (and I suspect for you also). You are right to point out that I have been judging you based on nuerotypical standards in this conversation, and really did not consider that you may need to intellectualize to understand. That wasn’t fair, and I apologize.
I want to, and I will, respond in more depth and detail to what you have written, but due to some real life issues it will take me one or two days before I can really give this the attention it deserves. Please bear with me!
Thank you for that.
Please note that I have taken pains to try to leave places for you to show me where I might do things differently. I’m not claiming that I am making no mistakes here, only that there are a lot of things going on. I feel particularly bad that my specific issues leave me acting in ways similar to folks that you have fair problems with. I have seen it in the past and recognized the similarities, but have not gotten the opportunity to think about what that might mean in deeper ways. Ideally this is something that a group of cognitively disabled bloggers can even think about in terms of solutions in the future as many of these issues we are talking about actually contain aspects that make them very similar to other things causing trouble elsewhere.
@Joshua White
I am trying to shift gears here and be very specific to lay out my thought process and avoid miscommunication. That has made this post ridiculously long. I’m also afraid that, because of the detail, it may seem like I am talking down to you in places. That is NOT what I want! Please give me feedback… if this is too much and not helpful I can try something different (feel free to suggest) or go back to my typical style.
*”I completely accepted the fact that Jackie felt the way that they did about their experiences. Are you trying to say that it was not appropriate for me to try to understand if Jackie believed that no parents could…”
I had to give this some serious thought, but yes, I think that is what I’m saying. In my opinion, (I understand that not everyone agrees with me) the way that you attempted to open up this conversation/debate in this particular thread was insensitive, and it was not appropriate to be insensitive in this situation, when people were already hurting.
I do NOT think that the question can never be asked, or that the concept should not be investigated at all (you mentioned that you asked a friend of yours with autism, which seems to be a good first step). Let me try to explain my objection to how you did it here. There are several things that go into my judgment on this, and I’ll list them out one by one. This is going be long …
The backdrop (you had no control over this, but I think it matters):
The recent history of the environment (aka: the handling of the valentine incident by some writers of Skepchick). I think you are familiar with what I am referencing here, so I’m not going to go into a lot of detail. This left many of the developmentally disabled people objecting feeling hurt and disrespected, and I think reasonably nervous that their concerns in the future may also be ignored or invalidated (this is just my reading of the comments of course, but the fact that it was referenced in this thread lends validity to my belief that it had an impact here). The end result of this incident is that many disabled people could not consider Skepchick a safe space.
The current environment (aka: the misunderstandings at the beginning of the thread). When I read the beginning of this thread my perception was of a few autistic people trying, sincerely and in great detail, to explain why it was a very big problem within the autistic community to let able parents speak for their autistic children here and asking that it not be allowed. The responses that they originally got quickly turned hostile (again, to my reading… I know that Will and Sarah disagree) and though they initially asked on March 1st, they did not get a definitive answer to their concern until March 8th (Will disagrees with me here also, see my original two comments for my thinking on this). In my opinion, this set the tone for the thread, making it a place where other members of the autistic community, far from feeling comfortable, came to validate that this IS a major issue for them and try to defend the idea that they should be taken seriously and their wishes respected. So now we have a thread where the marginalized group in question is on the defensive, on a site which many feel has a recent history of not hearing and respecting their issues.
** Just based on the backdrop, this is a thread in which I would try (and I would want others to try) to be very, very, extra sensitive about posting comments that could be interpreted as arguing against the marginalized group’s interests (unless I was a part of that group), because I would value not causing them further harm over having my question answered in this thread.**
Things you had at least some control over:
Sensitivity to the emotional state of the person you tried to engage. Jackie Rose came into the conversation later, with what I think was the most raw and emotional post, trying to describe their lived experience so clearly that even those of us who have not lived it could still connect with it in an empathetic way. It seemed clear to me that talking about this issue was bringing up a lot of pain for them, re-opening wounds so to speak. This does not mark this person as someone who is looking to have a more philosophical/intellectual conversation about whether or not they think there should be any exceptions at all to a no parent rule and why (which I still think has been covered, but more on that later). They may well be perfectly capable of having that conversation, but likely (and understandably) are not interested in doing so on a thread where
1.)they started on the defensive about an issue which
2.) has deeply and specifically affected not just their lives but the lives of many in their community, about which
3.) they are usually ignored or talked over, and
4.) they have just made a heartfelt plea for empathy and understanding to which
5.) someone has already responded using the term “knee-jerk”.
As I mentioned before, without the context of your last posts, it looked to me like you were doing some combination of intellectualizing and “Just Asking Questions” (which unfortunately I have had way too much experience with in my own life) so I jumped in thinking that if I were Jackie Rose, I would walk away from this conversation and not look back. If I understood you properly however, the sort of empathetic/emotional thinking I am talking about in this section is not a thing your brain is good at, so I am honestly not sure how you would be expected to read it. In context, it makes much more sense that you just do not see it this way.
Ganging up. I am assuming that when you said “That actually describes how I came into this discussion as well.” you were talking about coming to marilove’s aid (let me know if I have this wrong). The thing is, when it was just marilove and Jackie Rose it was one on one. When you joined in, you made it two on one “against” Jackie Rose in a situation where they were already clearly feeling attacked. Personally attacked on an extremely sensitive issue. That puts the whole two on one thing in a different context than if they were, say, having a friendly debate that they both found interesting and stimulating on a topic of interest (in which case, jump in, no problem). I understand (better now) that you weren’t trying to make anyone feel further attacked, but I use the “against” and “ganging up” language to illustrate that I think this is how it felt (or would have felt, we don’t know if they read your post or not) to Jackie Rose. This is how it would have felt to me if I were in their place. I would be very interested to understand your thought process on this if you are willing to explain… why did you feel the need to jump in there?
**Also, a point about me. I am someone who thinks that effect is usually more important than intent. I do think intent is very important, but in the end it is the effect of my words and actions that impact those around me. Caring about people around me means caring about effect.**
Okay, so “…can you give me specific things that I should have done in addition to what I was doing?” That is a difficult question because of the “in addition to” phrase. I have to change it to “instead of” to answer it. I will tell you what I would have done, and then give you my best suggestion for you.
**Disclaimer* My thinking focuses a lot on morality, empathy, and connection (reason and logic are important to ground the other things in reality, which is why I’m part of the skeptic community as well). Due to an abusive background I have spent plenty of time in therapy as an adolescent and adult, and have studied a lot of psychology. As a result of my experiences, I tend to feel things very intensely, and am always trying to empathize with others. This means that I will always be extra cautious and err on the side of being “too” sensitive to another’s feelings if I perceive that we are discussing a thing that is very important to them. I do this actively, because in my opinion, it is the right thing to do. Certainly not everyone agrees.**
Instead of posting on this thread, I would have
– Read what I could about the topic from different perspectives to try to get a more full understanding. (You may well have done this)
– Asked an autistic friend who would know me well enough to not feel attacked by my question about a sensitive issue. (Which you did)
– Gone to a site or two for the autistic community (preferably run by the autistic community) and asked if they were willing to talk to me about this. If not, I would ask them for suggested resources to help answer my questions. (The reason that I would have done this is because they have control of that environment and would likely be feeling supported there, not defensive. My asking if it was “okay for me to ask this here” would show respect for their feelings and understanding that this is a sensitive issue. It would minimize as much as possible the chance of anyone feeling attacked or ganged up on while still allowing me to hopefully get some answers to my questions. Part and parcel to this is that if the answer was “no” I would need to respect that and not push.)
If you felt that you wanted answers from the specific people addressing the issue here and so you needed to post on this thread, my suggestion would have been to ask if they would be willing to have the conversation. Something along the lines of:
“Hi [names], I am trying to understand some details of what you are saying here regarding whether or not you think parents could ever neutrally represent their autistic children, but I need to ask some questions for clarification. I genuinely want to understand your full perspective on this. I have Tourette’s Syndrome and ADHD so I process information in a highly intellectual way. I am worried that I may come across as clinical or uncaring if I just start asking my questions, so I wanted to know if any of you would be willing to have a conversation with me about this here. If not, could you direct me to a place where I could get some answers?”
Obviously you would word it in a way that was authentic to you and what your intentions were, but you see what I mean. I don’t know if any of that was useful to you, but that’s what I’ve got.
Some other things you said that I want to respond to:
* “One can intellectualize and listen and I still don’t see that I was not listening.”
I see that in my first mention of this I do say “intellectualize my experience without listening to me”, and I should have gone back to fix it, but I didn’t notice. In my subsequent mentions of it, including one of my last lines of that post, I say “listening with empathy”. This was the heart of what I was trying to get across. I could see that you were listening, but it didn’t look to me like you were empathizing.
*”I’m part of that community in a general sense. I have similar experiences to everyone that you quoted.”
I also have similar experiences. My views are likely to be ignored, devalued, or talked over by men because I’m a woman. Even if they don’t intend to, they will almost always give more credence and consideration to the ideas of the man sitting next to me because of my gender. While this can make me better able to empathize with other marginalized groups, it does not mean that I truly understand. For example, a woman of color faces what I just outlined above and more. She may be sensitive to an issue that I don’t have, or even MORE sensitive to an issue that I do have because it has affected her more consistently or in a specifically painful way. I cannot claim that because I am a woman too I truly understand her experiences, because there are some issues (or severities of issues) that are specific to women of color. I am worried that what you are trying to say here is “I get it, I really do!” but I don’t think that this is an issue that you can fully “get” unless you are a part of the autistic community.
All the rest of what I wanted to talk about was about your actual question of parents being able to neutrally represent children, but I’m tired tonight and this is already WAY too long. There is one more thing I would like to know, if you are willing to answer. With all else being equal, if you were given the decision of whether or not to leave an option open for parent bloggers on this site, and you had determined that a parent could in fact be a neutral voice for their child, would you leave that option open? Why?
silverfeather13
Thank you very much for the thorough and measured reply. It may take me a bit to give it a worthy response.
@ silverfeather13
I don’t really think that this post is ridiculously long. The dynamic of commenting that I usually follow is that things start out shorter, but as two people get down to the meat of an issue (either person’s issue) more words are often needed. But no one is obligated to respond immediately and there is no reason that the dynamic can’t change as things get longer. If a longer response is required no one should place a negative judgment on length of reply or time of reply because that says nothing about why things have taken longer or the quality of the reply. People need the time that they need.
Also consider that many of the comments in here besides ours are also very long.
*”The backdrop…”
For the purposes of this response I am going to assume that we are on the same page with the concept of a “safe space”. This is however very dangerous so I have some questions in here to clarify (do you have something I can read? It’s not really part of the commenting policy). I also think that I can see that it’s not what I am asking/saying, but rather how I am asking/saying that you are trying to talk about. So while I am going to look at other aspects of this situation don’t think that I am trying to ignore this because what I am trying to do is better understand how you came to see all of this the way that you do.
In a larger sense I can agree on what the intent of some autistic individuals were, and the expectations that they reasonably wanted. Let me make sure I have you right. (Note that where I say “cognitively disabled”, “autistic” is the specific example. I’m not ignoring this, I just like to phrase things in as neutral and useful a way as possible.)
*Backdrop
Several past posts on Skepchick that created a lot of bad feelings between disabled individuals and representatives of Skepchick and the Skepchick community.
*Current Post
Perceived hostility on the part of Skepchick representatives and community to the views and experiences that cognitively disabled individuals are offering in this post.
*Current impressions of some cognitively disabled individuals.
Doubts about the ability of Skepchick to be a safe space for cognitively disabled individuals, and a place where these individuals can be represented fairly and honestly.
*With respect to the backdrop I can agree that there is reason for bad feelings. I saw places where the issue of ablist words, comments, and/or beliefs were being dismissed for irrational reasons (ironically similar to reasons for avoiding sexist and misogynist language in places). I saw people dismissing the whole effort as an organized attempt to troll Skepchick without any good explanation. If I go back I’m sure that I can find more. But past problems must be considered with some standard of evidence that allows for improvement in future behavior (posts), and I don’t see much of that in the comments here.
*With respect to the current environment I don’t see the hostility the way that you do. I will explain how I see things evolve above, but please feel free to show me where things look different to you.
The hostility in this post started with people other than Sarah and Will from what I can see. Hostility creates a set of reactions that go in both directions. Accusations of “tokenism” and demands for apologies or retractions from people either uninvolved with other situations, or demands for an apology from people who may not know why they should apologize are not really reasonable (a discussion to resolve why people should apologize or retract is a necessary next step). Sara clearly felt harassed and I think that counts as a relevant issue because that indicates bad feelings that Skepchick representatives also are bringing in which are as important as those of the people who have problems with them.
While Will did make a mistake in responding to the use of the word queer instead of addressing a larger issue, this is not really an example of something hostile so I don’t think this is what you have in mind. Will’s response to couldbesun was hostile (I would say challenging but perceptions count), but this was not in response to anyone talking about parents of cognitively disabled persons. When Will finally started getting into a genuine argument with Kaia it was in response to some very real black and white characterizations of him that include things that I think he had the right to question.
Questions: are people who need a safe space allowed to abuse those who are trying to provide it? Is the use of hostility and other negatives against representatives of the space appropriate given the way it forces people down particular paths of reaction? Or are the people discussing how they feel also obligated to avoid some behavior of their own as well?
I don’t mind that you are criticizing hostile challenge of what others may be saying, but there is more than one source of hostility (or just challenge because perceptions vary) here and I don’t think that a safe space is a good excuse for the use of hostility on others by the people that need the safe space.
*With respect to the timing of a reply from Skepchick representatives, I honestly don’t see why the timing in their replies gives any cause for assumptions about them with respect to anything. Sure it’s annoying that they did not even give a “we are still considering the issue” (so I agree with some people complaining about it in general). But this says absolutely nothing about motives and what I see above is lots of insinuations and implications that bullied Sara into giving replies.
*”*Things you had at least some control over…”
Trying to change the way that I approach something like this is something I can do and I will try to consider. However a portion of this will be, well scripted because properly understanding the emotional state of another (especially during emotionally intense situations) is a characteristic of TS. I can see them talking about the way that they feel with respect to the issue but inserting myself into situations that I am interested in can be awkward because the emotional signatures that are supposed to help me to find the “proper” way to do so don’t work the way they are supposed to. So I have to learn to recognize them on a more intellectual level.
*”*Ganging up. I am assuming that when you said “That actually describes how I came into this discussion as well.” you were talking about coming to marilove’s aid…”
I came in for multiple reasons. The parents of people with TS also have a similar relationship with their children. Just because I’m not autistic does not mean that I can’t understand the situation since we also have cognition that is different enough to be alien to others. I came in because the general issue applies to me too, and my feelings on the issue also count.
If you go back and look at the series again you will see that marilove was also responding to criticism from others in the series of responses they were engaged in concerning Jackie’s posts. It was not just one-on-one, it was a small group talking about the issue. I had related concerns so I jumped in and gave my opinion expecting to work it out with others in the responses.
I also criticized they way that marilove’s comment was construed as saying that all of Jackie’s comment was “knee-jerk” in the same comment. Where you are sensitive to social damage done by others challenging opinions in particular ways, I am sensitive to social damage done by dishonest portrayals of others based on my own history. Note that my opinion on the issue, and my criticism of the deceptiveness were separate things and even if my opinion about parents is wrong, I still feel justified in pointing out deceptive characterizations as you feel justified in criticizing an atmosphere that is unrealistically challenging to experiences.
*”That is a difficult question because of the “in addition to” phrase…”
The fact that you changed “in addition to” to “instead of” does help me see what you are getting at in a larger sense here. And it reveals a pretty major problem that might need to be addressed long term for issues such as this. Is there a strict definition of “safe space” that can agreed upon? Because my idea of a safe space is going to be different from someone else’s without some sort of set of principles, and the fact that these principles don’t seem to apply to everyone (the issues with Will and sarah) in the space is a concern to me.
*”Instead of posting on this thread, I would have…”
That sounds like an awful lot of work just to join in the discussion. I’m fine with some of it but I don’t really think that some of the rest is reasonable.
I’m fine changing my approach in terms of reducing how aggressive it might seem, though I will have to find ways of figuring out precisely how because people’s tolerances vary and this is a place where my social programming is wonky. I’ll consider the script you just gave me and try to see how I feel about applying it to me.
But it seems excessive to have to figure out what I need to read, and then go read it, and then post. I think that it’s more realistic to be willing to consider what and why others believe what they believe, to be willing to consider links to material that supports what they believe, and to be responsive to anything they offer. Additionally I don’t see a reason why what I posted was inappropriate (the problem seems to be my emotional approach, “how” instead of “what”). So while checking for appropriateness is a good idea (as well as I am able), I can’t really see that what I asked was not appropriate. But even then as you can see I am willing to talk about appropriateness that might exist outside of the commenting rules.
*”Some other things you said that I want to respond to:”
*”I see that in my first mention of this I do say…”
Empathy is a more complicated affair when one has good intentions and problems inhibiting their personal frame of reference. I try to use reason and logic to understand when I need to because I have to if I want other persons meaning to actually stay in my memory for the long term because my amygdala just does not produce emotional signatures in my memory in that manner. Otherwise I can just end up confused about how the emotional content of the paragraphs lead to the conclusions given. I feel bad that they feel bad, but how they feel will not likely change the way I feel about what they are talking about.
*”I also have similar experiences. My views are…”
“I get it, I really do!” Keep in mind that there is “getting it” in the broad sense of having the right frames of reference from legitimate experience, and “getting it” in the specific case of objections to an autistic person communicating through another. I do not believe that I can “get” autism or the social experience of autism. As a cognitively disabled person I have enough of a general frame of reference as a person to be in the same category as there are things in my mind that people with TS can’t easily imagine, so I can have opinions about the cognitively disabled communicating through parents in a general sense (my wording was precise in previous comments), and take seriously things specific to people with autism (when one who is opposed actually decides to talk to me about this issue). But I would hope that you have the ability to recognize that people can have opinions about things that that they don’t have direct experience of, and that not every opinion contrary to a person with that experience is an attempt to claim an equal social position to being the one with the experiences. How do you tell the difference?
*”With all else being equal, if you were given the decision of whether or not to leave an option open for parent bloggers on this site, and you had determined that a parent could in fact be a neutral voice for their child, would you leave that option open? Why?”
I would leave it open only if I could set up the process for approving such parents, through the approval of people with autism. If they can satisfy the critics with relevant experience that would be good enough for me. Didn’t you see the parts above where I said that bloggers with autism would be a good group of people to help set a standard of evidence?
The thing is there are hundreds if not thousands of places where parents do already have a voice. Acting as if they’re on the same level of being silenced as disabled people, as if they’re oppressed, that’s why people are mad.
TW: abuse
There also was something I forgot to mention in my previous posts. I’ve seen communities dedicated to people with disabilities slowly changed to meet the parents desires for what they want for the community, not the people with disabilities. For example Wrongplanet, they used to not be for Autism Speaks, enough parents gave their testimonies and WrongPlanet caved in. Meanwhile, WrongPlanet separated the parents from the main discussion, and gave them the idea that because it was their area they could bully anyone who wasn’t a parent outside of the discussions there. I don’t want that to happen here, and I’m afraid it will. If this future site is not discovered by Autism Speaks parents and railed against for it, there will be parents who won’t stop to see that Autism Speaks and organizations like them find a voice here. I’m not suggesting all parents would do this, but after I was banned from Wrongplanet for taking a stand against a clearly abusive parent, who was punishing his child by taking away objects he enjoyed, or limiting his interaction with them. As if that would teach his son anything more than his father holds power over him, and he is to fear him. I’m afraid that parents like that will come here, write their perspective on how disciplining their child in an abusive manner made their child more neurotypical or well behaved.
I don’t have a problem with parents of disabled kids, I have a problem with the ones who are skilled at avoiding detection from the mods. You can’t police the site 24/7, or check out every single comment. It only would take one instance of “I taught my child to not stim by taking their PC away.” to cause someone to have a meltdown or go into a depression. I don’t think you or the mods here know just how fragile the community you’re attempting to support is about this. How deep the wounds they have are, and how easy it is to open them back up again. I just don’t want my friends to be hurt again, because a self-righteous parent waltzes in and posts some horrific screed and escapes the mods before people have been broken again.
That’s why, which I’ll admit now, was very angry to a point of not communicating well. This happens to us again, and again, and again. There is never a moment it stops, unless we’re fortunate enough to escape society. I’ve seen parents in general treat people with disabilities in ways they’d be absolutely horrified to find out someone had treated their child. Perhaps I’m overprotective too much like my dad, or I’ve been through too much to have the hope or trust others do that this will work. I just read that people were asking for help and input about this, and even though I launched into it much like Jonathan Davis from Korn, I don’t want there to be any more pain. I’m surprised that people are able to survive Tumblr which seems to care very little if at all about protecting, well, anyone really. I’ve been to communities that claimed they understood, only to have people there who heard I have Asperger’s Syndrome and gaslighted me to a point of serious “I’m going back to Hot Topic and becoming Goth again.” extremes of depression. I’ve had parents gaslight me, and I don’t know how they could do that to someone else morally, when they would be livid if someone did that to their child. I truly think you underestimate greatly their desperation to have their say, and the lengths they will go to defend themselves. Even telling people on the Autism spectrum things like, “Thank goodness you don’t have children!” and “It sounds like you’ll never be able to handle the real world.” I’ve had these things said to me, I felt that no matter what I did I’d never be able to survive society. Remember parents have said this to me, parents of children, and if they have no qualms about treating me this way, how do you think they’d treat their kids? I can understand a bit of defensiveness, telling me to bug off. To tell someone who has a cognitive disability you’ll never make it in the outside world? This is just what I can remember, and from what I recall it likely was even worse. Because I stood up and said no, you can’t emotionally terrify your Autistic child into compliance, it’s wrong. The mods banned me, on their word, and now they’re following one of the most infamously abusive Autistic “advocacy” groups out there.
This is really all I have to say about this, because despite usually having decent control of my emotions, this has made me very sad. It has brought up a lot of bad memories, and I just want no one else to have to go through what I went through. I’m not the only one who is afraid. You don’t know these people like we do, they will destroy souls and break angels if it means they get to parent their disabled child harshly and get support for it.
I just think we have a LOT of really smart parents in our circle of Skeptics, and that it’s important to give those reasonable, smart people a voice so that there are other representations of parents out there — and not just the assholes. Does that make sense?
And even in those places, the reasonable voices are generally drowned out by the unreasonable voices. We could be a place that isn’t like that. And, no, we can’t police this place 24/7, but I think the Skepchick mods do a REALLY good job of moding this site. We don’t let other people take over this space, and I’m sure the same would happen in a space for disabled parents.
I just think it would be helpful to have a space for reasonable parents to communicate and be vocal, and I personally feel like Skepchick is a really great place for that. It also helps that we’re a bit smaller than, say, Tumblr. AND it helps that we have different sister-sites, because it makes modding easier.
I don’t think people are objecting to “disabled parents” having a voice on the Disability sister site, I think they are objecting to neurotypical parents speaking FOR autistic children. Which, if you read the comments, seems to be a thing that happens with depressing frequency in very abusive ways.
In light of everything I’ve read, I’m really glad there will be zero tolerance policy for that here. It seems like the right thing to do if what we care about is making sure marginalized people’s voices take priority.
Yes, exactly what silverfeather13 said.
I don’t have a problem with able parents blogging about parenting on the parenting blog. I have a big problem with them blogging in a space that is supposed to be for disabled voices.
A change of pace. I am an advocate that the disability section of Skepchick should be run by the disabled. If there is a place for the parents, careers or teachers of the disabled on this sub site I would propose that it be limited to posing questions to the authors/admin.
As an example: As a parent of an ‘X’ child I have tried ‘Y’, Have any of the Skepchick community had any experience with this approach? What advise can you give me.