2/3 And I thought, wow, weird, but ok, they know this kid, they deal with developmentally disabled kids every day, they know better. And I didn’t think about it much. But then I read what you wrote about understanding, but not being able to respond. And it blew my mind. I thought of that kid, and how maybe asking him would have made perfect sense, because even if he can’t respond, that doesn’t mean he doesn’t get to be asked,
3/3and it doesn’t mean he doesn’t get to at least know what people want to do with his art. Even if he doesn’t have the capacity to voice his opinion about it. Thanks for writing about the way you do and don’t communicate, and explaining that lack of communication doesn’t equal lack of personhood or awareness. I will know that next time something like this happens, and maybe it will make a difference to the DD person it concerns.
Wow I’m seriously happy that people are asking him.
Something that made me cry, later, when I was capable of crying:
Sometimes I’m incapable of showing a single signal that I am aware of anything. Nothing. Not with my eyes, not with anything.
Normally, I’m accustomed to even people who know me, treating me different. At least, their manner of talking to me and their voice changes, they get nervous. At most… I get to learn what they really think of me, because they talk about me as if I’m not even there, including complaining about me in terms that made it 100% clear that they would not say this if they thought I was present there with them.
So I was at AutCom and I’d just given a presentation. It was super-crowded — the AutCom conference, 3 weddings, and a Bar Mitzvah, going on all at once in this hotel. I had a killer migraine and I was overloaded and I’d just gotten through my presentation, which I’d given by lying on the floor writhing because I couldn’t get up. One of those days. When it was over, a bunch of us autistic people (all nonspeaking normally), all went out into the hall in various stages of shutdown. Larry Bissonette was pacing. I was leaning up against a wall and I couldn’t move or even focus my eyes or move my eyes in any way.
I love Sandra Radisch’s writing and I wish I’d had a chance to meet her when either of us was more communicative. But her staff person came up to me to tell me what my presentation meant to her. And she did not bat an eyelash, she did not change her way of speaking to me in the slightest, she talked to me as if she was talking to any random person, even though I had no prayer of even blinking my eyes in response to her at that point.
And that meant more to me than you could believe.
If this child gets talked to respectfully and as if people expect him to understand, then he will understand. He may or may not understand the words. There is no way of telling even whether a very verbal person understands the words. He may understand every word said, or none, or it may vary day to day.
But at minimum, he will understand what it means to be spoken to respectfully — people with receptive language problems tend to do better at picking up on emotional content like that, so if he doesn’t understand the words, he will doubtless understand the intent. And he will begin to expect to be asked. He will expect respect. And when respect is not given, he will react badly. And that is the beginning of self-advocacy for people with very severe communication impairments.
But he will also possibly remember the first time he was ever asked, for the rest of his life. When nobody ever asks — it means the world. It meant the world to me, and I’m nowhere near in the position of being underestimated as thoroughly as this boy is. Talk to him. Include him. Ask him things. Talk even if you expect no response. It will mean something to him. It could mean everything to him.
Ok…don’t use the term ‘retard’ or ‘faggot’. Just don’t use them. There’s no justification for it and it is just as easy to not use them.
If someone asks you not to use them, it’s not to spare their feelings or anything it’s because it’s wrong. Using them is not the same as using a swear word because when you use them, you’re using them to insult someone.
The problem in this is that these words originated as a way society used to describe certain people and by you using these words negatively you are insulting a wide spectrum of people. Calling someone a ‘retard’ as a way of insulting someone’s intelligence is so disrespectful because who are you to say people with mental retardation are stupid. People learn, grow, develop and adapt in different ways and at different rates.
It’s time people start accepting the wide diversity of people the planet has instead of trying to justify their prejudices.
Don’t ignore intersectionality.
There are disabled PoC, disabled queer women, disabled old people, disabled fat people, disabled children.
And many, many more and combinations thereof. Don’t ignore reality, show a wide variety of people.
I am a disabled woman.
I am pro choice.
But every time someone on MY side opens their mouths and tells stories about people aborting their disabled fetuses in order to show why we NEED abortion, I feel sick. I feel betrayed. I feel like my life isn’t worth considering.
I want to preface this by saying that throughout this reflection, when I use “whiteness” I mean it as shorthand, inspired in bell hooks’ definition, for “white supremacist, heteronormative, cissupremacist, capitalist, Imperialist patriarchy” (see here Trudy’s compiled list of origins of definitions and here for bell hooks’ own usage of these ideas in one example of her own writing). I understand that “whiteness” usually means different things to different people but this is what I have in mind when I speak about it. Whiteness as “system of interlocked oppressions”.
Yesterday I shared Sarah Kendzior’s excellent post about media cruelty and exclusion. A number of people objected to the ableism in the piece, mostly, the conflation of sociopathy to racism/ misogyny/ transphobia, etc (you can see it in the reblogs of my post but I also saw the objections pop up on Twitter). Last week, a woman of color, in a private space, asked if people thought that referring to racism as sociopathy was ableist. The question was based, I presumed, in the definition of sociopathy as one in “which a person has a long-term pattern of manipulating, exploiting, or violating the rights of others”. The responses (all of them), said yes. Equating racism to sociopathy was ableist. In all these instances described, the respondents pointing out the ableism were white.
I realized in these incidents that there seems to be a disconnect and lack of understanding of the framework to explain what we are experiencing as PoC. The ableism highlighted in these situations might be technically correct. These could be interpreted as ableist ways of describing social problems, unless the “observer” was implicated by virtue of being on the receiving end of these behaviors. I am not trying to gloss over the implication for mental health and for the stigmas associated with mental illness. Yet, I also realized that for many of us, myself included, whiteness can only be described as a social disease. We lack words to explain this in ways that do not further stigmatize people. I am aware that saying racism is sociopathic could be interpreted as ableist and yet, how do we describe a culture wide phenomenon that kills us? how do we describe a political system founded on our shared inhumanity? how do we describe an oppression that is rooted in lack of empathy and love towards us? Again, this is not to gloss over ableism but what words do we have to pick from? One of the consequences of epistemic injustice is that we do not have accepted frameworks to explain our lives. By “accepted”, I mean, frameworks that are society-wide accepted and recognized as valid throughout academia, mainstream media and public discourses including but not limited to policy and laws. So, in this denial of our knowledge and theories, we are left gasping for air. Here we stand looking for words that would encompass the gravity of what we experience.
Tim Wise, someone whose work is awful, has spoken about the pathology of privilege and this is where Tim Wise’s phony and shallow activism comes through. Privilege is not the pathology. Privilege is the symptom of whiteness as a social disease that kills us. The outcome of our systemic Othering and eventual deaths is the privilege. Wise, ever the apologist, falls into the white trap I’ve written about this past week claiming that racism is bad not because it kills PoC, racism is bad for white people because it causes them mental illnesses:
That’s what white privilege does to white folks. But that’s not all. It also creates an intense anxiety, like a mental dysfunction, an emotional anxiety, and distress. If you are privileged after all, if you are the top dog, if you have all the advantage, you are constantly afraid of who’s gaining on you. You’re constantly afraid of who’s coming to take what you have. You’ve got to close the border. They’re coming to take our stuff. We’ve got to worry about terrorists. They’re coming to take our stuff. We got to get them before they get us; preventative war. We’ve got to stop them. That’s what privilege will do for you because those who have it are constantly anxious. A study in June of 2004, in the journal of the American Medical Association, which received very little attention, found that in the United States the rates of anxiety disorder, depression, and substance abuse related mental disorders are twice the global average, five times the rate in Nigeria. How is it that the most powerful and privileged people on earth can have so much more anxiety than people who live in war torn areas, civil war, political corruption, amazing problems, often famine, all kinds of hardships, that for the most part, we don’t see at least in the same abundance, let’s say, in the United States? And yet, it is here that the greatest level of anxiety exists. I would suggest that the reason that happens is because it’s the privilege that generates the anxiety.
See? White folks suffer more than those Black folks in Nigeria or in war thorn, famine suffering countries! (really? how did he get away with the inherent white supremacy of this statement?! and worse, how did he become mandatory reading material in educational institutions across the Western world?! I know the answer, these are the rhetorical questions I ask myself in disbelief).
How do we, as PoC define a system where you are viewed and treated as the disease and as the reason for the disease (which is what Tim Wise implies, by proximity, in his statements above)? Because if white folks experience anxiety and mental health issues due to a desperation to preserve their privilege, aren’t we somewhat responsible for their perceived suffering as well? How do we steer clear of this language to explain “whiteness as a system that immunizes itself from our existence”? Yes, these are all disease related metaphors and yet, which other metaphors do we have to illustrate something that kills us? Moreover, how do those of us who bear the marks of this whiteness while simultaneously dealing with mental health issues and the associated stigmas find an appropriate framework that doesn’t stigmatize us in one of our intersecting oppressions?
In the Journal of Disability Studies Quarterly, Phil Smith writes about “Whiteness, Normal Theory, and Disability Studies”. From his paper:
Racism is defined bluntly and cogently as “an ideological ethnocentric diseased set of beliefs
“A diseased set of beliefs”. And then, further on, this:
It is very true that minorities are at greater risk for acquiring disability labels and losing ability capacities, often as a result of impoverishment (O’Connor 1993). Difficulty in obtaining services for African Americans may include issues including impoverishment, discrimination, and services that are not culturally competent.[…]
And race has been tied in basic ways to understandings and metaphors of developmental disability. For example, prior to the label of Down syndrome used by modernist medical science, the term Mongolism was the dominant term. The construction of people with disabilities as freaks is “steeped in racism, imperialism, and handicapism…”. Psychiatric survivors have also experienced a “potent fusion of insanity and blackness” as the result of racialized terror felt by Whites.
Race and disability have resided in the same social terrains throughout their history, especially so in educational territories. Eugenicist, modernist science has been instrumental in conflating the cultural topography of disability and race. For example, research has shown over and over that there is a relationship between eligibility for special education services and race […]
One of the most recent of these studies revealed that “…black public school students are three times as likely as whites to be identified as mentally retarded and in need of special-education services…” (Tato 2001, Paragraph 4). Another source notes that African-American students are mis-identified as being mentally retarded or emotionally disturbed at much higher rates than whites […]
I could go on quoting more race based ableist stigmas from this paper but I won’t. My point is made: ableist discourses rest on a foundation of racist Othering. This is not to say that white people are not oppressed by ableism. This is to say that whiteness (see my first paragraph for the working definition) will do away with their own if, by proximity, they can be linked to “us”. And if that is not the textbook definition of a culture that exhibits a “long-term pattern of manipulating, exploiting, or violating the rights of others”, then what other words are we left to use to define it?
Things that, as a mentally ill person, I do not find offensive:
- Using the words “crazy” or “nuts” or “insane” to describe something unexpected or incredible, such as “Mars has two moons?! That’s crazy!” or “Wow, those Westboro Baptists sure believe some crazy shit” or “that party was insane!" or "You really think you can have unlimited chocolate by cutting it a certain way? Are you insane?" or "One Direction’s fans went nuts when they stepped out of that chariot."
- Using words like “lunatic” or “madman” to describe someone who’s behavior is fanatical, like “Why is that raving lunatic shouting about abortion at this soldier’s funeral?”
Things that, as a mentally ill person, I find incredibly offensive:
- When you use the words “crazy” or “nuts” or “insane” or “lunatic” or “madman” or any variant as a way of dismissing me or people like me and acting like we’re not full people
- The portrayal in the media of mentally ill people as not existing beyond their illness on the rare occasion we’re shown as existing at all
- The portrayal of mentally ill people as dangerous, or more violent than mentally healthy people, or less intelligent and competent to run their own lives than mentally healthy people, and the fact that a lot of writers don’t seem to understand that “mentally ill” is not a motivation.
- The fact that every time there’s a mass shooting or a bombing or an attack and they can’t scapegoat a religion or race for the crime, the perpetrator seems to grow a mental illness just in time for the trial, and people think that explains (or in some cases excuses) what they did
- The fact that when people push for not allowing people who can’t use them responsibly to own weapons, they always seem to start at “mentally ill people” on the list of people who shouldn’t be allowed handle weapons, even though there’s no correlation between mental illness and violence.
- When people say “you’d have to be crazy to (commit atrocity)” even though no, sane people commit atrocities all the time. In fact, most violent crime is committed by people with no mental illness.
- The fact that I have literally seen otherwise-progressive people suggest that all mentally ill people be registered by the government, and perhaps required to identify themselves, and maybe imprisoned for public safety if the need arises. How would you have us identify ourselves? Should we wear a patch on our clothes, or just present our papers upon request?
But I think what really gets me the most:
- When mentally healthy people call others out on our behalf when it comes to things on the first list, but remain completely silent about, or even actively complicit in, everything on the second list.
this post is extremely important. no one deserves to have their mental illness/condition thrown in their face in any way.
**though keep in mind that some people can be triggered by words like “crazy” and “insane” because those words have been used to hurt or gaslight them in the past. so trying to eliminate such ableist terms from your vocabulary can’t hurt***
We started the flight late, and over the PA we were told it was to accommodate a special needs person. Then I heard the guy behind my seat say “I hate ‘special needs people’,” and proceeded to joke about how we should just “kill them all.” He seriously went on like it was legitimately this great idea, and even mentioned that a TED talk spoof (“speaking of great ideas” was the segue) about killing the elderly and how beneficial that would be.
Worst of all, it appeared he was talking to his father, who just was silent.
I felt terribly uncomfortable and disgusted, so I got up and told the flight crew he was making uncomfortable remarks. A hostess came over to him and said that if he had an opinion about their handicapped passenger to keep the comments to himself.
He hasn’t made a peep since. Yesss
Some able-bodied people are jealous that disabled people get to move to the head of lines. There’s been an increased amount of animosity toward people in wheelchairs, so as someone in a wheelchair I thought I could do a quick summary of the preliminary work it takes to move to the front of the line.
I have been to some rather big events, highly publicized and in professional venues such as the Hollywood Bowl, so I’ll use one of these times and this particular venue as an example:
Handicap seating was not being sold through Ticketmaster, after searching through the promotional website I found a small mention that handicap seating would have to be purchased through Hollywood Bowl
I call multiple numbers for Hollywood Bowl over the span of 48 hours, mostly speaking to people who either denied the fact that there was handicap seating available in the Stadium (which was a blatant lie) or people who were completely at a loss to what to do for me because they were selling tickets for the event
Another days is spent calling between many offices until finally someone specifically pulls the tickets in the wheelchair seating section and sells them to me over the phone.
I only for the cheap seats but because handicap seating was in the middle I would have to pay to sit there. It didn’t seem to occur to anyone that this was segregation with a financial penalty.
The tickets would be available to pick up an hour before the event outside the Stadium. I can only be moderately sure my tickets would be there since the only thing needed to obtain the tickets was to show proof of ID but they weren’t doing that this particular time, so just giving them your name would do.
After all that, I get to move to the front line and sometimes even taken in earlier so I can seat myself without a crush of people who are angry at me for all of my disability privileges.
This says nothing about how hard it is for me to even get to the venue or the work that goes into making sure I’m comfortable throughout the event. But that’s another story.