Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Zisk, Alyssa Hillary. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Zisk, A. H. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from

Friday, July 26, 2013

Disclosing Disability Relationships

I begin by saying "HEY! I got CITED IN A THING!" Because I totally did. This is what my citation looks like:
Yes, That Too. (2013, Jan. 25) "Do YOU have a child with autism?" Yes, That Too. Retrieved from
I mean, yeah, my name is Alyssa, but Corbett, the person writing the paper, didn't know that or me, and she still chose to cite me.  I found out that she cited me because I met her at SDS and when she found out that I am Yes, That Too she told me about it. And I was excited because CITATIONS. I'm a wee bit academic like that.
So now that she cited me (I don't know that I was really the best person to cite, or that that was the best post of mine to cite for the things she cited me for, but hey, it works as a post you can get the thing from. I suppose that this post is the new best post of mine to cite these ideas from.)
Anyways, here are the two quotes where she cited me:
In recent blogs by autistics 10 there is concern expressed about the trend by some parents of autistics to state that their experience is equivalent to the autistic experience. (Yes, That Too, 2013).
(Yes, I did let her know that when Autistic is a noun, it is capitalized. But that's not really the point here.)
That concern, which I do have, is a real concern. I know it's one that happens with autistic people and their families. Amanda talked about seeing a journal issue dedicated to "first-person" narratives of autism where the majority of articles were by relatives, how people really do think that being the relative of an autistic person is effectively the same as being an autistic person in terms of experiences (Baggs.) That's a thing I worry about, because I know it's a thing, and because Amanda, who has been in this stuff way longer than I have, says it's getting worse, not better.
"When people attempt to speak for others, such as parents of disabled children presuming to know the lived experiences of disabled adults, then the usefulness of their information may be questioned (Yes, That Too, 2013)."
I totally don't remember saying anything that eloquent in that piece, but the meaning? OH YES DID I EVER have that kind of meaning. Because it's true. It may be questioned. It needs to be questioned. There are plenty of useful things that family members and close friends can know, can learn. Like Corbett says, "Direct connection with a person in an oppressed group brings the otherwise privileged person into situations that challenge their privilege" (2013.) This is valuable. It is worth aknowledging, in both activist and scholarly circles. But.
There are issues with using a disability identifier for family members who are not disabled in the same way that we would use it for the person who actually is disabled. If a person is living with autism (I hate that terminology, but it gets used,) then their family members should get a different term. Because their family has different experiences. "While we need to acknowledge the intimate experiences of ableism gained by people living with disabled people, we also need to clarify the ways that nondisabled people have ableist privilege even when they experience ableism daily through their family member." (O'Toole 2013.)
There are also issues when people don't want to look at their privileges. That's a big piece of it going on in the autism communities, and in Disability Studies "nondisclosure allowed the field to avoid discussions of ableism and privilege"(O'Toole 2013.) That sounds like a similar issue. In the disability rights movement, they disclose their relationships to disability publicly within their activism, but in disability studies, it seems to be just within social networks. I can say that I didn't know who was and wasn't disabled for much of my reading, or what their relationships with disability were, but "no Disability Studies curriculum would include only writings by people who never identify their relationship to disability" (O'Toole 2013.) That means some people need to be disclosing. No curriculum should be all non-disabled people, either, which means that to have a curriculum, we need disabled people among those who are disclosing.
And one of the things people say is that we can't just "out" people. Well, no, we can't just "out" people. That's why we're asking people to disclose themselves. Can a person still refuse? Well, sure. But are there going to be problems in the field if most people refuse? Yeah. There was some noted irony, though: "The irony of the fact that they are using queer terminology, that they are queer allies, that they are not queer, is not lost on me. Why does it feel like they are asking me to stop this discussion? Because they are." (O'Toole 2013.) So why are they asking her to stop this discussion? That's the next question I come to. Why does this bother them? She notes that "no one objected to my signifying someone as "nondisabled," as if that was a neutral signifier." That's not what I would expect for a "doesn't want to look at their privileges" issue, but I'm still suspicious that this is happening, to some extent. It's "Disabled" that they don't want people saying (Spaz Girl.)  It's Disabled, Autistic, that people don't like me saying, (Don't Call Me a Person With Autism) and it's often a privilege thing there too.
And then, of course, we do talk about it- in social circles. Not in presentations, not in papers- there we need to be academically neutral, it seems? But those who are in social circles with scholars will often know their relationship to disability.
Typically people's professional relationships to disability are known, particularly if they teach or publish. For example, Kim Nielsen 8 (nondisabled) is an American history professor who teaches Disability Studies courses. The fact that Kim is also the parent of a person with a disability, but only became so after being in the field for nearly a decade, may be shared with close friends and may be known within small subsets of professional circles but may not be widely known. This dichotomy of information is typical in Disability Studies circles. (O'Toole 2013.)
Multiple relationships. We can have multiple relationships to disability. I have multiple relationships to disability. Most of mine are autism-related, but not all. I am Autistic. I have an autistic grandfather. The aunt I get my middle name from was multiply-disabled, and autistic was probably part of her story. I have disabled friends- mostly autistic, but not all. Some have cerebral palsy (one has CP and is autistic.) Some have epilepsy in addition to being autistic. I am young disability studies scholar. And like Corbett says, "For people with multiple relationships to disabilities, a different signifier may be appropriate in different situations—or at least the order of signifiers may change." (2013.) That's part of how it works. The signifiers are all still there, all affect our perspectives, but what is the most relevant right now? That might change.

Alyssa. "Do YOU Have a Child with Autism?" Web log post. Yes, That Too. 25 Jan. 2013. Web. 25 July 2013. <>. (Corbett cited this as having an author of Yes, That Too since she didn't know my name at the time- this is the one she cited.)
Alyssa. "Don't Call Me a Person With Autism." Yes, That Too. Web. 25 July 2013. <>.
Baggs, Amanda. "I Just Skimmed through an Issue of an Autism Journal Dedicated to “first Person" Accounts of Autism." Web log post. You Don't Need This Junk. You Need a Cat. 15 July 2013. Web. 25 July 2013. <>.
O'Toole, Corbett J. "Disclosing Our Relationships to Disabilities: An Invitation for Disability Studies Scholars." Disability Studies Quarterly 33.2 (2013). Web. 25 July 2013.
Spaz Girl. "Don't Sanitize My Disability Justice." Web log post. That Crazy Crippled Chick. 25 July 2013. Web. 25 July 2013. <>.



  1. *pendant alert* I don't know about your friend, but my cousin with cerebral palsy prefers "CP" over "palsy" for short because CP is specific but there's more than one type of palsy. */pendant*

    Otherwise, congratulations on your citation!

    1. I'll check with my friend, then. And seriously? Have you seen my NINE posts about NO I AM NOT A PERSON WITH AUTISM I AM AUTISTIC? I shouldn't throw stones about language statements of the "heads up that the group you're referring to often has a different preference from what you used" sort.

    2. Fair enough. If I don't disclaim ahead of time that I know I'm being picky, I tend to piss off people, so my pendant alert is more to forestall accusations of unreasonability. I wouldn't have brought it up if I didn't know from reading your blog that you're the sort who actually gives a damn about this stuff. :)

    3. So I've got two CP friends I reference here. One does prefer CP for herself, one says either is fine. So I'm going to fix it for when I talk about the one who prefers CP. Thanks for bringing it up.

  2. I'm a little confused about the Kim Nielsen example. The citation says she gave permission to be used as the example, but... her book "A Disability History of the United States," which was published in 2012, begins with a personal note disclosing everything mentioned here as things she DOESN'T generally disclose, and in detail. This is her only book that is on, so I assume it's the most widely-known one and that students or other scholars would have easy access to it (the disclosure part is in the free "look within" preview). Maybe she used to not disclose her relationship with disability and that's where the example is coming from? I'm probably being too nitpicky, and I'm willing to believe that in general disability scholars don't disclose, but Nielsen seems more like an example of a disability scholar who's made a point of making her present and past relationship with disability common knowledge and bringing it up as a relevant point to her writing.


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