“People with disabilities have forgotten how to suffer and be still.
They want to raise the consciousness of others to their plight, to have
their oppression recognized and brought to an end, and to feel good
about themselves, even though other people do not feel good about
disability.”
– Tobin Siebers, Disability Theory, page 35
Recently, in my online travels, I ran across a piece that was rather strident in its bigotry against members of a religious minority group. As is my habit in these kinds of situations, I told the person who had posted the piece that I’d found it offensive. Within seconds, a third person chimed in and lamented, “You just can’t say anything these days without someone being offended!” — the implication being that I was oversensitive, that I had unwittingly become part of a cabal that roams the world looking for things to be offended by and that, having located something to be offended by, I was bound and determined to carry out my proto-fascist agenda and stifle free speech.
Of course, the content of the post and my specific concerns mattered not. The issue wasn’t the substance of the post. The issue is that I was offended at all.
I am seeing this type of response more and more. Sometimes, it’s said in a tone of exasperation: Why do you have to be so offended? Sometimes, it’s said in a mocking tone: I wonder whether we’ll be able to go five minutes without someone being offended! And sometimes, it’s said in an accusatory tone: Why can’t you stop being offended so we can all get along?
All of these responses came to mind as I was reading a post on Support for Special Needs called No Offense. In it, the author imagines an ideal scenario in which disabled adults, parents of disabled children, and associated professionals all take part in a conference in which people could speak openly about their feelings regarding disability, and in which no one present would either take offense or express outrage. Parents could speak freely, no holds barred, using whatever words they chose. Disabled people could talk about… I’m not sure, but whatever it was, outrage could not enter into it, and words like ableist or privileged would be considered inflammatory. It wasn’t that the author thought that any of this was literally possible; in fact, he was quite clear that it wasn’t. What struck me was that that he considered it an ideal, something to be devoutly wished. And judging by most (but, by no means, all) of the comments on the piece, that ideal scenario seemed to be the dream of a great many people.
And so, I hope you’ll understand my discomfort as I declare my decidedly unpopular view that such a situation is not my ideal. In fact, I’m offended by the very notion of it. And by saying the forbidden words I’m offended, I’m well aware that I have broken the rules of the ideal, and that I have outed myself as one of those inconvenient people who speak their minds and interrupt the general kumbaya.
The easiest way for me to express why I am offended is to start with an analogy. Consider that, instead of the conference being about disability, the conference was about race. Imagine that the conference brought together white people and people of color to speak their minds, no holds barred — except that people of color could not use the word racism when a white person said something they considered racist, and that no one could express outrage or offense. Think of it! White people talking about their negative experiences with people of color, people of color talking about… anything that didn’t have the word racism in it or that didn’t have to do with outrage, with the ideal being that no one should take offense or express offense.
Why would anyone wish for a conference like that? What would be its purpose? Catharsis? And what could anyone possibly learn by not talking about the ways in which we take offense, when our offense is a barometer of the injustices that we face every day of our lives?
Now, I know that some people will feel that this is a false analogy, because they believe that disability and race are not analogous categories, and because they feel that, while there may be racism in the world, there isn’t anything analogous going on regarding disability. In fact, they would be wrong, on both counts. Race and disability are both about the ways in which a society values or devalues, represents or misrepresents, privileges or oppresses people with different kinds of bodies. Disability is not simply a physical condition of an individual; it is a social condition, in which our bodies are marked for exclusion, for vulnerability, for misrepresentation, and for prejudice in the larger culture. Prejudice against disabled people is so widespread that it is invisible, formless, and ubiquitous. We live in a world permeated by ableism, and by being able to identify it and to speak to it when it rears its ugly head, we can understand it, defend ourselves from it, and begin to break its stranglehold.
One of the sticking points in the disability community, of course, is the necessity of raising the issue of ableism with able-bodied parents — parents who cherish their disabled children, who advocate for them tirelessly, and who lie awake at night worried about what will happen to them as adults. At first glance, it seems hostile and insulting to accuse parents of ableism in the way one might accuse someone of racism. The only thing I can say in response is that every person I have ever met, disabled or not, has imbibed the poison of ableism. I certainly have. I fight it in myself every day. And the more I fight it, the more capable I am of living a life without shame, and the more empowered I am to make change.
A further analogy with race is appropriate here: Suppose you are the white mother of an African-American child, and you inadvertently say something racist. I don’t mean something shockingly, obviously, anyone-should-know-better racist. I mean something you didn’t realize was racist, something that could cause your child to feel less than worthy and less than equal to other people. An example: Until several months ago, I used the term “It’s a tar baby” to describe situations in which I was stuck on a fear or a resentment and couldn’t let it go. And then I was told that people of color consider the phrase racist. I had no idea. So I stopped using it. I was glad someone told me. And if I were the mother of an African-American child, I would certainly want someone to tell me, in the most direct terms possible, that the phrase should leave my vocabulary. I would never assume that I’d rooted all racism out of my brain. I would never assume that my love for my child inured me to it. In a society permeated with racism, it wouldn’t be possible. And so I’d welcome people calling me out if I inadvertently spoke or acted in a way that might have a negative effect on my child.
I hope that, at some point, more parents of children with disabilities will be open to these kinds of conversations with disabled people. Those of us who are disabled perceive ableism and feel its impact firsthand, and we can speak from experience about its effects. In the autism community, at least, we are very far from having that conversation, as seen in the latest debacle, in which a parent used the phrase “Suck it, autism” and stuck proudly by it, even after autistic people and other autism parents told her that the phrase was painful, demeaning, and potentially harmful. She didn’t say, “I really don’t want to insult or harm people. There must be another way for me to express my feelings.” Instead, she went on using the phrase and glorying in it. I don’t know about anyone else in the room, but I find that response both insensitive and irresponsible. It’s not censorship to ask people to be responsible with their words about a beleaguered minority. It’s simply asking for an ethical response that goes beyond the right to have a public catharsis.
But what’s most disturbing in conversations about taking offense is that our feelings as disabled people are minimized as merely personal, rather than being properly treated as expressions of social and political outrage deriving from our shared experiences. We’re told that we’re holding onto our hurt, nursing our injury, obsessed with our pain, and narcissistically engaged with our own suffering — a charge that militates against seeing our suffering as an indication of maladies in the larger world. As Tobin Siebers writes:
“The accusation of narcissism rages just below the surface in current debates about disability in higher education and in American culture. Most important, this accusation is a major impediment to reform in healthcare and other areas of concern crucial to the lives of people with disabilities. It represents the marginalization of disabled people as their own choice, one made for perverse and selfish reasons, seemingly relieving society at large of any responsibility for antidisability discrimination, the inaccessible built environment, and the long history of confining disabled people in medical institutions.” (Siebers 43-44)
Claims of personal offense are always couched in the language of pathology; it is always considered a maladjustment to a personal hurt. But here’s a news flash: I take very little offense, simply on my own behalf, to what people say. My offense is collective and political. When I see people saying destructive things about disabled people, I am offended not just for myself, but on behalf of other disabled people, and about an injustice being done. Yes, it affects me, but it isn’t just about me. It’s about all of us.
So make no mistake: I will continue to be offended by things that are offensive, and I will continue to speak up about why they are offensive. I hope that you will, too.
—
Siebers, Tobin. Disability Theory. Ann Arbor: The University of Michigan Press, 2011.
© 2012 by Rachel Cohen-Rottenberg
YES, yes yes! You often manage to take the garbled mass of thoughts percolating in my brain and get out a cogent, articulate argument.
I think that one of the underlying messages I’ve picked up on over my many years of being told “could we just go five minutes without someone being offended?!”, is: SHUT UP. Which, if the speaker actually said it, would probably have not much leg, socially speaking, to stand on.
When it’s cloaked in terms of social harmony, even if it’s at the expense of my harmony, it’s a good thing to say. After all, you must be concerned with everybody’s mental health and welfare, not your own.
Crap, crap, crap. I have no problem with selfishly motivated expression, in fact the opposite! Especially my fellow Canadians, polite to the point of repression. I encourage the people I know to own up to their selfishness, if only for clarity, not to mention taking responsibility for one’s feelings.
Selfishness is human, and common. Responsibility is much less common. Nobody wants to feel like a ‘bad-guy’, and so either says nothing when they see injustice, or blames taking offense as the culprit for fostering disharmony.
You could also use the analogy of religion to that of race. Oh wait, that is too analogous, people are constantly telling me I have no right to claim their anti-Jewish acts or speech are anti-Semitic. I am too sensitive to it…..etc etc…..If one wants to see ableism at high intensity, all you have to do is look at many Jewish organizations….and then, when I point out the ableism and its analogy to anti Semitism, the place gets Very. Very. Quiet.
sauce for the goose is sauce for the gander… if it’s an open market of ideas, then if A can express difficult/challenging ideas about B, then B can express them about A. call me a retard and i’ll call you a bigot– or, we can decide to both be civil.
You use the term ‘ableism’ describing some parents, but I don’t understand what you mean by this. Could you please eplain it to me?
Hi Cat,
Thanks for your question. Here is an excellent piece that is well worth reading:
http://flutterflyinvasion.tumblr.com/post/18565857749/just-because-its-ableist-doesnt-mean-its-bad
And here are two additional pieces, related specifically to autism:
http://autistichoya.blogspot.com/2011/11/but-im-not-ableist.html
http://autistichoya.blogspot.com/2011/12/advocacy-and-ableism.html
And here is a very good definition of ableism by Ed Ised:
“The cultural standards which glorify particular abilities while demonizing others. These not only decide who works and whose work is appreciated, but also who is seen to provide value to our society at all. By default, these standards teach that many people have no value and are nothing but burdens.”
I think that what the author of “No Offense” consistently fails to get is that we don’t get offended just because it’s fun to be up on an indignant high horse, or sad and angry all the time, or at some kind of abstract philosophical objection to certain language, but because that language causes actual harm to actual people. That is the source of offense.
Thank you, Rachel. Sincerely.
Excellent. Thank you.
Completely agree with what you write, but it is bound to very unpopular.
Some great points Rachel, though I echo the sentiments of Cat (and would go one further). The word Abelism really needed to be defined first because it turns out that it means exactly the opposite of what I’d always though it would.
This short definition works for me:
Abelism; the view “that the able-bodied are the norm in society, and that people who have disabilities must either strive to become that norm or should keep their distance from able-bodied people.”
Now I can see it as a really bad thing.
I do feel frustrated at times that “you can’t say anything without offending someone”. I don’t want to be offensive but at the same time I don’t want to censor myself so badly that I say nothing at all. I guess the point is for us to be apologetic and understanding when we do offend people but to also recognise the value of free speech. Personally, I learn a lot just from being corrected by others.
Great post! I was very bothered in both of these instances that they did not want to hear that their words were offensive. I was even more bothered by some of the comments from other parents. Parents that I had previously thought were accepting of autistics. That hurt me a lot and I am still processing that. Words are extremely hurtful. If I think you are a friend and understanding and then comment that you would give your child a pill to cure their autism because you see what they are missing. By who’s standards are they missing something in life? One of these days will post my thoughts but not able to currently. Oh and by the way I am self diagnosed because can’t even find someone local that diagnosis an adult. Not sure would get the diagnosis anyways because I blend in so well. But then that means I am not really autistic right? (I really liked the post above “but I’m not ableist” I am not making it up. What do I have to gain by having the diagnosis of autism. I am not looking for an excuse for something. Just accepting me as me. Sorry for the rant.
Thank you for explaining so well.
I’ve been writing and re-writing my comment for 15 minutes now and I can’t seem to get it right. So I’ll just say thank you for your perspective. I do think that the internet has created a reactionary culture, not just in this community, and this puts people on the defensive. There is a better way to communicate. No one has the responsibility to teach me, but I do appreciate it, as well as the benefit of the doubt when I do mis-speak.
Thank you Rachel. I love your blog posts. Like a cool refreshing dip into the lake of reason. Bigotry has become the fashion since President Obama’s election. And the cache phrase for getting away with it is arguing that anyone who opposes ableist, racist, homophobic language is oversensitive. The words ‘politically correct’ are used as an insult. Maybe this will begin shaming people into reason.
What Kerima said.
Great post, Rachel!
You don’t have to be disabled or be part of a minority to feel offended. I felt offended at being called a bigot and a curebie because my words were completely misconstrued by a group of people. Had I been approached differently, I may not have reacted out of anger. While I defend my right to feel what I feel, I have taken a few days to reflect on what transpired and thanks to some level-headed folks who disagreed with me in a productive manner, I have a new found appreciation for their point of view. However, this does not dilute the fact that the very same people who blasted me for using offensive language turned around and did the exact same thing to me. Do we not lead by example? I find it offensive to be called a curebie; especially because the autism spectrum is vast and no one has a right to assume they know the degree to which an individual is impacted. Why should I apologize for wanting better for my son? Why is curebie okay but telling people that autism sometimes sucks isn’t? It just feels awfully convenient and hypocritical. But I’m nothing if not a human being who desires to empathize with others and so my heart is open and my ears are poised to listen.
Wanting what’s best for our kids is a separate issue; it doesn’t justify offensive behavior. And in general when people tell us our language offends them, then it’s time to ask why instead of retrenching and getting defensive.
Reorienting one’s brain to a respectful and appreciative outlook can be hard, hard work, especially for people (mostly but not always parents in the autism arenas) who have never been exposed to or criticized for or conceptualized the offensiveness of their ableist behavior. But it’s the right thing to do.
And sometimes, the reorientation takes a while to sink in — it’s a process. Give yourself time, keep reflecting, stop writing about this topic for a while if need be. Be willing to make and own mistakes. Cultivate humility. And think about how you would feel if your son, grown, was one of the people criticizing you.
More thoughts: http://thinkingautismguide.blogspot.com/2012/01/how-autism-parents-can-listen-to-self.html
But Jo, “autism sometimes sucks” isn’t what you said. Can you understand the difference in meaning between that, with which I don’t think very many people could find much cause to disagree with (I could be wrong, though), and what you actually said, that “autism can suck it?”
To people who understand autism as an intrinsic part of who we are, the latter is an attack, literally, on our right to live in this world as whole, loved people. It distinctly does NOT carry the connotation of wanting better for us. It does not lead me to expect understanding or patience to follow from someone who makes it. It provokes my fight or flight response, frankly.
You should not be called names. But that kind of anger is a reaction to a statement that suggests rather violently to some of us that the essential nature of who we are is shameful, hated, and worthy of mockery and bullying.
Thanks so much for weighing in. That’s why I’m hear and that’s why I chimed in. To gain perspective, to learn more, to try and make sense of what happened.
Hi, Jo,
I’m a non-disabled parent of an autistic child. I am so glad to hear you say that you are open and listening! That is a huge step for us all to take in the autism community, so thank you for saying that.
You might be feeling overwhelmed by all the responses to your question, right?, but I wanted to talk about your question of why it’s acceptable for the other side to attack you in response to your inflammatory language.
Here’s what I said in a recent post: (http://mamabegood.blogspot.com/2012/02/asking-tough-questions.html)
“Treating each other with respect doesn’t mean no differing opinions. It doesn’t mean we can’t point out an argument’s weakness, fallacies, and stereotypes. It doesn’t mean avoiding conflict at all costs.
It means no name-calling, no attacking the person instead of the topic, no inflammatory or derogatory language. It means curiosity and an openness to others. It means patience and humor. ”
So first, I think we all need to refrain from saying things like “suck it” when something as serious as this issue is. Derogatory language like this *seems* to be more acceptable than it used to be; I wouldn’t DREAM of saying this to my mother, which is an indication that it’s derogatory. But we see it on television, pop culture, the blogs that make us laugh have all sorts of profanity. Do we even remember what the “it” is in the phrase “suck it?” Would we want our kids to say that to anyone? Common usage in pop culture doesn’t make it acceptable to use and it’s not helpful in any debate.
“Curebie” simply doesn’t have the same derogatory connotation. It’s not profanity. But again, it is name-calling and any name-calling in a debate is not helpful. It’s okay to criticize the idea, but name-calling is not part of a serious debate.
Generally, the author of a post sets the tone of debate. If we don’t want to encourage profanity, derogatory or inflammatory language, or name-calling in the comments, then we shouldn’t use it in our posts.
The next issue is why we, the non-autistic majority, should be more willing to listen to autistic individuals. Simply because they are the minority. Autistics haven’t had the time or space to be heard that we parents & professionals have had. Their stories are valid and valuable. They’ve been left out of conversations that we’ve had more participation in. We need to listen more, to understand more, even if that requires looking past the language used, and to respect their opinions more.
I want to thank you for reading through my and all the responses here to your questions. I am encouraged by the thoughtful and respectful conversations like these. I hope we can listen and talk more about these issues.
Thank you everyone for weighing in. I think you hit the nail on the head Brenda when you said that the culture has def. changed in regards to language we deem appropriate for everyday use in interactions (whether in “real life” or not). I use suck it on a casual basis with my sister and friends when we are not within earshot and no, I don’t think about the “it” in the statement. I even wrote a post a few years ago, “Father Son Time Can Suck It” about my husband taking our then 6 year old for a weekend boys camping trip and how I missed them both.
But you are also right when you say posting like this opens the gate for debate. However, after writing that post, Landon from ThAutcast began the name calling immediately and instead of engaging in thoughtful dialogue, he proceeded to say that all of my autism articles for The OC Register were bigoted and hateful. WHAT? How could they be hateful when they were honest reflections of my journey as a parent? (you are welcome to read archives if you wish at ocmoms.com/jo) I consider myself a decent human being with a lot of compassion and empathy, and so that’s why I continue to reach out on posts like this, to gain perspective and knowledge and insight. But I also refuse to be censored for my feelings. This was the first post I ever said Suck It Autism in and yet Landon says ALL of my stuff lately is hateful and bigoted? That’s discounting my experience with autism and what it means to me, and our family has right to address those perspectives. He picked apart a photo I chose for the post and somehow came to the conclusion that I must be abusing my son. Again, WHAT? That is not a healthy way to approach the situation. It’s what a bully does. This post however, has such a different feeling and I read it because it was informative without trying to bully someone into submission.
And lastly, I’m having a hard time with the self-diagnosed camp, so someone please enlighten me. How is it that my kiddo had to be medically and neurologically evaluated (as well as speech, hearing, etc) and now people can just say they have autism and they have it? This is why there is so much confusion. I’m not trying to “cure” (and really “Cure” at our house means doing what we can to heal Andrew from the inside out without causing harm and giving him opportunity for growth and progress) those who can actually diagnose themselves and go on to live full lives (note I didn’t say perfect lives or NT lives). I realize this is long-winded and a bit all over the place, but I just want to better understand.
Jo, I did not see your original post, so I’ll not speak to any of the fallout from that or anything. I see that no one’s responded to your question about self-diagnosed autistics, though so I figured I’d chime in a bit. (oops just read a bit further and Rachel did respond a ways below, I’ll just add my thoughts…)
I am not diagnosed, but I do consider myself to be on the spectrum, you can read my story here: http://tmbmt.mycustomdata.com/blog/?p=105. That link should give you a fairly good look into my personal perspective and reasoning behind not seeking a diagnosis.
The way you posed your question leads me to believe that you almost feel slighted that someone can claim the autistic label without having to do all the work that you did to get your child diagnosed. It’s a little difficult for me to wrap my mind around this perspective, and not knowing your full story I don’t want to presume too much.
I feel like I need to address this, but it’s hard to address. You see, I’m not arrogant enough to presume myself an expert at diagnosing autism spectrum conditions (frankly, there’s so much disagreement even between the ‘experts’ I’m not sure anyone is, but I digress). Therefore, no matter how much I identify with autistics, no matter how much I benefit from sitting on the sidelines of this community, I will never feel like I can really “belong” without that official diagnosis.
I also know that I will never get that diagnosis unless and until they come up with a diagnostic test that does not use subjective measures. Not only do I not trust psychologists to make a call on someone’s neurological wiring, I believe that I have dedicated so much of my life to studying and learning how to function in a world in which I do not fit, that I have successfully masked the things that may have made me stand out as autistic in the past. My extreme need to be honest means I wouldn’t allow myself to drop that learning and ‘act like I used to’, so I probably wouldn’t get the diagnosis now unless I shopped around for someone who would look at my past well enough, and ask the right questions about how I process things internally, and spend enough time to see the autistic traits that leak through when my mask is down or I’m under stress. But shopping around is precisely the kind of thing that calls into question someone’s diagnosis, so my diagnosis would be questioned even if I did get it.
You see, your child needs the diagnosis for supports, for therapy, for considerations from school, and so many other things that you, as a good parent, want to make sure you provide. But your feeling of slight that someone can claim the label without going through those particular hoops makes no sense to me, because those of us who have made it to adulthood without a diagnosis had to do so much more work to make it. We needed those same supports, but did not get them, we had to do all of that on our own.
Most of us have spent more time studying human behavior than the experts that you send your children to, but where they’ve studied to try to understand the autistic mind, we’ve studied to try to understand the neurotypical. And where they’ve studied to try to learn how to help autistics act ‘normal’, we’ve studied how to make ourselves pass for ‘normal’, in a desperate attempt to avoid bullying and finally fit in somewhere.
The autistic community sometimes feels to me like a desert mirage. There’s an entire world full of people out there who I can actually understand and relate to. It’s just in sight… a place where I can act like myself without being seen as damaged. Where people understand me and I understand them on a fundamental level. But it’s always just out of grasp, because I will never quite be accepted, and I will never feel quite right in declaring myself an official member.
It’s a rather painful place I’m in. I imagine that’s true for most people who are ‘self-diagnosed’. It’s nothing to envy or be jealous of, and we’re not trying to take anything away from you or your child. Not only did we not get the supports then, but we wouldn’t qualify for any of them now if we needed them. But we can finally see an entire world full of people that we understand, that understand us, and we want desperately to be able to speak out, to help the next generation grow up in a world where they never have to feel that way.
Tam, this is so beautiful and true and much of what I did feel in the years when I thought that I was most likely on the spectrum but hadn’t sought a diagnosis yet.
If you ever do want to get an official diagnosis, you might actually be surprised at how little “shopping around” you might have to do…if there’s an autism support group for adults in your area, you might ask them to recommend a professional who knows what they’re talking about, who will be familiar with the kinds of coping that undiagnosed adults have had to do.
Thank you so much for taking the time to answer my question. I asked it in hopes of being able to understand better. I will be perfectly honest. I have not had much (if at all) interactions with high functioning adults on the spectrum (at least, not to my knowledge)and so my vision of autism is fairly tunneled. Which is why I was so taken aback by the hate mail I received after I wrote my post. I was writing it with other parents like myself in mind, dealing with a very different form of autism than the one that I was introduced to by upset readers. And yeah. In the beginning I was really miffed, like “how dare you tell me I can’t feel this way, what the hell do you know and you’re not really autistic anyway….” but if I’ve learned nothing else during this experience it’s that I’ve got a lot to learn. *Sigh* I’m really not the hateful person some people are making me out to be. And I do believe that there are lots of lessons in all of this for me. Again. I really appreciate your perspective and the only reason I came back on this site again was because I was hoping someone would answer my question. And you did. So thank you.
Part of why small children have to go through so much to make sure that it *is* autism is because children have so much less ability to describe their own experience. Lots of things can, externally, be ambivalent, and a small child, especially a non-verbal one, can’t tell you which it is because they just don’t know that much about themselves or the world.
Adults, who have often gone a long, long time without anyone ever really describing our experience…well, it’s a pretty unmistakable feeling when you hear someone speaking your language about your life for the first time. We’ve spent a very long time learning to be able to tell the ways in which we’re different from the norm…and when you hear other people describing your life, as if from inside your head, for the first time, it’s jaw-dropping.
In the first few months after I was diagnosed, when I was starting to connect to other autistic people online, and there was a small circle of several of us who’d either been officially diagnosed or self-diagnosed around the same time, and we spent so many blog comments going “HOW THE HELL ARE YOU TRANSCRIBING FROM INSIDE MY HEAD? How can you know everything that I’ve never told anyone?!”
I was officially diagnosed, finally, after waiting too long in no small part because of the nastiness of the prejudice that exists against the self-diagnosed…and the insights of the self-diagnosed are just as likely to match up with my own experiences as those of the officially diagnosed. (Also, the insights of the more severely autistic are just as likely to match up with my perceptions as those of other people with Asperger’s, and sometimes more so. Other Aspie women, for instance, often describe “pretending to be normal,” which is something that I have never been able to do.) People don’t want to be seen as faking a disability, and sooo many self-diagnosed people put themselves through mental hoops of fire with internal conflict about what to do, because the cultural prejudice against the validity of people who “find a diagnosis on the internet” is so strong.
Thank you for this insight. While I can’t relate to the autism aspect, I do have several diagnoses (panic attack disorder, ocd, depression, agoraphobia, vertigo, alcoholism) that are invisible to the untrained eye….but they hold me captive from the inside out.
Thanks to comments like yours and the one from Tam, I can see much clearer now.
“And lastly, I’m having a hard time with the self-diagnosed camp, so someone please enlighten me. How is it that my kiddo had to be medically and neurologically evaluated (as well as speech, hearing, etc) and now people can just say they have autism and they have it?”
You’re saying that if someone doesn’t have the resources to get a diagnosis like you do means they don’t deserve to think/know they’re autistic? Only people who are incapable of functioning without support are autistic enough? Or are you saying that someone who’s “really” autistic isn’t capable of researching a condition and understanding themselves enough to see that they probably have it? Or maybe you’re saying that only the children of parents who made the effort to get a diagnosis and proper support for them deserve the label “autistic”. I’m not sure which of those things you’re saying.
Just because someone is not diagnosed does not mean they are not autistic. Just because someone didn’t get proper support in school doesn’t mean they wouldn’t have done better with it.
The difference between “autism sometimes sucks,” which I am certain you wish you had said as it would save a lot of trouble and “autism can suck it!” which you did say, is the difference between frustration and obscenity use.
Many of us would agree that limitations related to our autism, or our kids’, or our partner’s are frustrating. We hate their inconveniences to our lives. We’d rather not have to deal with them. Life would be so much easier without them. However, many of us would also agree that parts of ourselves/our children/our partners directly related to the label or some of its behaviors can be fun, endearing, or interesting.
That said, The former is an expression of how something affects us which is to say an expression of frustration. It is expressing annoyance at an inconvenience we wish we did not have. The latter is use of a sexually related image relating to a condition that encompasses the totality of those people who are labeled with the words.
The former is not a full condemnation of the person and his or her condition. The latter is. The former does not condemn the entirety and equate it to an obscene act that can get a movie rated “r” while the latter does.
The former, as a limited statement, is not bigoted. The latter, using very strong language that could in many schools get a student detention, is bigoted in painting all of a group of people with a particular DSM IV diagnosis as essentially obscene.
The former, is not an ableist statement, the latter is, ableism being, as I see it, a world view saying that all people who are different from that which medical/educational/ social systems consider to be within the mythical “norms” are defective, inferior, bad and those within the norms are acceptable and to be honored.
Lest you say I do not deal with the inconveniences you do, be aware that I am the Apsie mom of 5 spectrum kids, 4 young adults and one still at home, and the partner of a dear dear man who one psychologist told me (on his late diagnosis of same) is “the poster child for Asperger”. I deal with issues like aggression to me from a child who is near my size and stronger, poo in the pants of a five footer, and a child who tries to claim he cannot learn because he has internalized an (inaccurate) self image from the ableist world. The last is by far the most challenging for me.
Others have covered most of the bases here, but there’s one other thing that I’d like to touch one:
“Why is curebie okay but telling people that autism sometimes sucks isn’t?”
The difference, to me, is that in one case you’re talking about something passive (autism happens, it’s not anything anyone does), and in the other something active (the words and actions of some autism parents). You can change your language, how you talk and think about autism. What you wrote was a conscious choice, even if you didn’t fully understand the implications of your words. You can change your use of language without changing who you are. Autistics can’t stop being autistic–and even if we could, many of us consider it too fundamental to our identities to do so.
I’m beginning to see the light I think.
I will be honest in saying that I do think autism sucks sometimes but as far as using Suck It….that won’t be happening again…at least not in a public forum such as a blog. I have plenty of other ways I can describe my intermittent frustrations with what is happening with my son. The truth is, I don’t value the autism the way others might. I do think (and have written about actually) that his diagnosis has given us an outlook on life we would have never had before and a level of compassion (not to mention patience) that I never thought possible. I love my kiddo and I don’t have any false sense of being able to fully eradicate the issues he faces,(truly, there is even much discourse among us parents with kids on the spectrum because of our different approaches and beliefs about this) but this fighter mentality is what has gotten me through some very hairy parenting moments and medical scares with him. Again. I appreciate you weighing in. Really.
Hmmmm… While I am fairly sure the original poster’s of the Offense piece did target self advocates (he is the one who introduced ableism into the conversation) I wouldn’t agree that the parents that approved of his post in the first flurry of replies quite got it. They seemed to understand it more as a criticism of the treatment wars (biomed vs. behavioral…).
The later reactions (including this post) are playing a role in educating more people (including myself) so despite the personal emotional cost to you and other participants in this debate I do believe that despite te fact that you must feel like a broken record it ended up generating more light than heat, in the end.
Thank you.
Hello Jo Ashline.
First of all I should point out that you are a minority, because you are a woman. You can be discriminated against because of your gender. And you are on the blog of a writer who does not accept the medical model of Autism. So asking why it is ok to call you names but not ok for you to insult the neurology of others is not good form here. I agree that no one has the right to call you a derogatory name. But you insulted the neurology of the entire community before anyone called you any names and you insisted on reposting something that was found so disturbing it was removed, rather than trying to understand what was offensive about it. And now you are seeking out more places to justify your position. I don’t quite understand what good purpose you wish to accomplish by doing this. While I am glad you were able to have positive dialog with others who helped you see why you acted in error, you refuse to apologize or remove your post. And that is your right. But having made the post open to others, you then open it to critique and cannot therefore go from blog to blog demanding to know why you can’t have your way.
Who am I to tell you anything? I am the mother of a deeply autistic 9 year old son who is nonspeaking. He is also growing at an alarming rate. And he sometimes has spectacular meltdowns the likes of which are not for the faint at heart. My son has pain from arthritis, which sometimes requires he use a wheelchair. I don’t know much about your son. I know about you. You blogged about your reaction to his autism. You appear to be angry about his condition.
I am also a Black of Hispanic Origin among other things. I am 50 and therefore understand bigotry quite well. And words of frustration have consequences. The outcry is not just about your insistence on republishing something. It is about the consequences those words. I also believe by insisting on posting something offensive and going from blog to blog arguing your right to insult others, you are also enabling those who may read what you print and come away thinking it is then ok to think that my son is less that their children. Our children’s brains are different. My life with my son is challenging. But I will not say that it’s autism’s fault. And when someone like you, a person who has a large audience, makes a statement like that it has consequences that you cannot imagine. People then feel justified in escalating things they say about their own children. Autism is not a cancer you can cut away from your son. It is part of his neurology. So when you say it sucks, you are attacking something that cannot be separated from your child. Like the color of my skin, it is part of who I am. Autism is part of who my son is. If I don’t begin by showing him that I am proud of all of him, he will believe he is less than others.
This is not about you, Jo. This is where you miss the point. It should never be about personal attacks. It is about your son, all those like him and their self-respect. And it is about the people who read what you write, knowing nothing about autism and coming away thinking our children are possessed by some awful thing that takes over then. An autistic child died because members of a church tried to cure him by exorcising a demon out of him. Another came from England because his parents wanted him to be chelated here as it is illegal there and died horribly. I’ve read your whole post. And I agree with those who say you clearly love your son. But I also believe you hold beliefs that damage him and those like him.
amen and thank you.
@Kerima,
So very well said. thank you.
Thank you Rachael , for a brilliantly written piece, from a disabled mum of a young boy on the spectrum…
Well said, and I agree. I only wish I were half as well spoken!
What Kerima said.
I’d also like to add that loving someone doesn’t keep you from being bigoted against one of their traits. I’m half Asian. My grandfather is horrendously racist against the Japanese, but he loves me. A couple of my siblings are homosexual. My mother is horrifically homophobic, but she loves them. And many parents and family members of disabled children love them fiercely but still hold in their head that disabled is less than, & that disability is an enemy.
The human capacity for doublethink is truly astonishing.
You are brilliant with logic and words Kassiane. You always say in a sharp little paragraph, what it would take me a clumsy chapter to convey.
Also if you did something cool and your grandfather said, “Awesome! The white part of you is winning!” you would probably not be into it. That seems pretty similar to “suck it, autism” (if I understand the original context).
Ohmygod.
If that happened…I would never forgive him. Ever. I still can’t really get past what he said at dinner when I was 6 or so, that really drove home that half of my heritage wasn’t acceptable to him.
Would never, ever, ever forgive him. Ever. Ever.
It wouldn’t be remotely acceptable, nor would anyone (I hope) try to defend it.
Jo – first, thank you for being willing to engage meaningfully – being willing to think about things. That matters, a lot.
I am a neurotypical parent to an autistic son. Here is what I have learned since my son was first diagnosed a few years ago:
Language matters. Kids grow up. Hating autism, telling it to ‘suck it’ or ‘F*** off’ – we’ve gotta do that in our own heads on our worst days, but putting it out into the world as a message – not cool anymore.
We all ‘want better for our kids’ when our kids are struggling. We wrap our hearts and heads around our autistic kids to figure out what is hurting them, and then work our asses off to make it stop – but meanwhile, autistic kids who have grown into autistic adults are telling us that something WE ARE DOING is what hurts them – and it’s damn well time we listened.
Many autistic adults are saying to us, “Your language and the way you are framing your concept of my differences, is hurtful to me personally and moreover – damaging to your own child’s sense of self-worth and the worth that the world will place upon them”. Whenever they say this, it turns into a debate. Many parents become defensive or confused, and start arguing. But what adult autistics are trying to get us to understand, is that their feelings are not up for “debate” and aren’t subject to the “opinions” of others. While it may seem reasonable to us on one hand to have opinions and want to debate things that make us uncomfortable or that challenge our long-held assumptions, it’s actually not reasonable. Not when we are ultimately questioning the validity of an autistic person’s own experience. Only THEY get to decide how they feel about their own experience.
For our part, we need to start listening to them, and figuring out whether the way we as a parent community have been doing things, is really the best way. Or whether we are in fact creating a lexicon of hateful, negative, intolerant verbs that will follow our kids right into adulthood. Words that will snake their way into the hearts and minds of society and then, like a sickness, taint the way the world views our kids when tey grow up. We know how amazing our kids are – YOU know how beautiful your child is – but when the world mainly hears a parent community that is mad as hell at – and disgusted with – autism – well they don’t see that amazing beauty in our kids. They just see the nasty-ass verbs we taught them to associate with our kids.
Now, this can totally be turned around. Parents can say – wait, that’s exactly what autistic people are doing to ME – they are questioning my experience and debating how I feel. Yes – they are. But there are 2 fundamental reasons why they get to do that: 1. they are not sending out messages en masse to society that say “Neurotypicality can SUCK IT” or “non-autistic neurologies can F*** off!”. WE are the ones saying those things so THEY get to be offended and call us on it; and 2. as parents we are entitled to our feelings and how we experience life as a parent of a child with autism – but we are NOT AUTISTIC. We can feel like it owns our whole being from morning to night, but that doesn’t make it OUR LIFE. It is our child’s life. It is our child’s disorder/difference/way of being and ONLY THEY get to tell us how it feels to be autistic in a world where it is not only acceptable but common to see headlines like “autism can suck it” and “F*** off autism!”. It’s THEIR right, not ours.
This is tough stuff to grapple with for sure – but without more parents coming to understand how crucial it is to change our language and reframe the discussion about autism, we are condemning our own children to a world that – at best – tolerates their suckiness, and at worst – tells them to FUCK OFF.
The fact that people have to try and excuse their right to be offensive bothers me. It always has. People get offended for a reason. The harmful stereotype of the angry black woman is the same as both the “super cripple” who is seen to “Rise above” their disability, the idea that people like me, who use a wheelchair should spend all our days trying to walk even when its impossible or painful… etc etc etc and so on I could list those all day. Those teach hate. There is no such thing as being offended for fun or pleasure. That is why I appreciate this post. I hope it is clear that I fully support the post above. I heard about the incident on facebook, it was discussed. It was discussed in depth. How can anyone as a parent willingly spew hate speech AGAINST THEIR CHILD?
Thank you for writing this. I cannot respond to the person who committed the hate speech right now and remain civil so, thank you, because this being addressed so coherently and calmly is wonderful.
Greetings Jo Ashline, I sincerely appreciate your willingness to to listen. I am an adult female on the autistic spectrum. I must admit, the first impression I got from your online communications was that you obviously love your son very much. That was clear by reading your blogs, and the fact that you were initially so determined to defend your point of view in honor of your son. I was really glad to hear that you’re now ready to open up your heart and listen to what others in our community would like to share with you about our individual and collective autism experiences.
Earlier Shannon asked you to “think about how you would feel if your son, grown, was one of the people criticizing you.” I’d like to ask you to think about how you would feel if your son, grown, came across your archived blog posts, and read with embarrassment, rejection, humiliation, and heartbreak all the things you, his mother wrote about him online when he was a child.
With all the parenting responsibilities, I can appreciate that it’s hard to imagine when our children are young that they will be adults one day. Perhaps it’s even harder if you’re not looking past tomorrow’s meltdown, or next week’s IEP. But I can assure you that next month will come, and the next, and the next. And before you know it, your son will be an autistic adult.
There have been some phenomenal voices from our community who have reached out to you on this thread, and I hope you will take this opportunity and allow their suggestions to resonate with you.
I was supposed to take part in a fun blog hop today but I decided to use it as a forum to express my feelings about all of this in a positive manner.
http://aspieside.com/2012/03/02/what-i-need-to-hear-snryangosling/
Great piece Rachel, and thanks to Jo and others for chiming in.
Jo has made a point about the language that’s used to point out offensive statements: bigot and curebie. I’m with her on that. It isn’t that ableist moments aren’t examples of bigotry; it’s that, as Rachel very honestly acknowledges, all of us have tendencies towards what is essentially bigotry (racism, sexism, ageism, ableism, etc). IMO what divides people is not whether or not we have prejudices, but whether or not we’re comfortable with our prejudices. I think it’s safe to say everyone here is not comfortable with their prejudices.
I continue to believe that negative verdicts should be held in reserve for those who clearly are, people who have made a conscious choice to hold onto their prejudices. Clearly Jo has taken on board the responses to her blog.
Every autistic child, teen and adult needs the neurodiversity perspective. Everyone needs a source of pride in who they are. Let’s be judicious about our own language around taking offense so we’re not building barriers that will make neurodiversity less accessible to the people who could benefit from it now or in future.
Thanks for the comment. I’m not going around from website to website to defend my position. I stopped here because of a link from another source. I commented because the author included a paragraph about what transpired on my blog.
Brilliant
“Language matters. Kids grow up. Hating autism, telling it to ‘suck it’ or ‘F*** off’ – we’ve gotta do that in our own heads on our worst days, but putting it out into the world as a message – not cool anymore.”
This is so profound
“But what’s most disturbing in conversations about taking offense is that our feelings as disabled people are minimized as merely personal, rather than being properly treated as expressions of social and political outrage deriving from our shared experiences”
Jo, thank you for your questions, and for engaging in this conversation. Some thoughts:
1) I don’t think that anyone is asking you to censor yourself from writing honestly about your journey as a parent. Speaking for myself, I read very widely in the parent community, because I want to understand the perspective of parents of disabled kids. While I am autistic, my daughter is neurotypical, so I understand autism from the inside, but I don’t know what it’s like to parent an autistic child. So I listen and learn. The issue isn’t that people shouldn’t express how they feel. It’s that they do so without doing potential harm to others, and that they not generalize from the specific, believing that their autism experience is everyone’s autism experience. To turn the example around: I grew up with abusive parents, but I would not say that all autism parents are abusive. I don’t say, “Suck it, NT parents,” because my parents were dysfunctional. I don’t even say, “Suck it, [my abusive parents]” because they weren’t just abusive; they also had very good qualities that I try to hang onto because if I didn’t, I’d only see one side of them, and the result is that I’d live my life in anger and bitterness forever. I don’t live my life that way. I acknowledge what they did — the good, the bad, and the ugly. I’ve found that that’s the most constructive way for me to go.
2) I agree with you that overstating the case — that all of your articles are bigoted — is not helpful. I think that specificity is very important — that people say exactly what words, what attitudes, what approaches are harmful and why. I also want to reinforce what Lucy said above — that there is a difference between holding bigoted ideas and being a bigot. Everyone holds bigoted ideas, and we have to get over feeling defensive when someone points them out. There is a difference, for instance, between someone telling me that I’ve got a racist idea in my head, and that I’m a racist. So I would have no problem with someone telling me I have bigoted ideas, but I would have a huge problem with someone saying I’m a bigot. I would reserve the latter term for people who do significant harm to other human beings and are proud of it. I don’t think anyone here feels that you are that sort of person. I certainly don’t. In general, I think it’s most constructive to address what people think, say, and do, rather than making a judgment about who/what they are.
3) In terms of self-diagnosis — Please be careful with what you consider “full lives.” There are an awful lot of people with Asperger’s/HFA (diagnosed and otherwise) who live lives of isolation, poverty, and severe emotional pain because of the bullying and exclusion they’ve lived with all their lives. A lot of adults self-diagnose because they can’t find a clinician willing to diagnose adults at all, and they want answers to what’s been going on with them their whole lives, and they want to find others like them. My diagnosis ended decades of wandering around, wondering where my people were, and I think that adults who self-identify are looking for that belonging. Even if you do find a clinician, it’s often difficult to get a proper diagnosis as an adult, because by the time we get seen, we’ve had decades to develop adaptive and masking strategies, and a lot of clinicians don’t see past those. It’s a particular problem for autistic women. I’m very fortunate that the specialist who diagnosed me saw past all that; many adults aren’t so lucky. I hope that gives you some insight as to what we’re dealing with.
“Please be careful with what you consider “full lives.” There are an awful lot of people with Asperger’s/HFA (diagnosed and otherwise) who live lives of isolation, poverty, and severe emotional pain because of the bullying and exclusion they’ve lived with all their lives.”
Also, some “LFA” people have fuller and more joyful lives than some HFA/Asperger’s people that I know.
And yes, some of the ignorance I encountered while looking for someone who would even look at me as an adult at all was truly astonishing. I actually had the head of neurology at a large public hospital which shall remain unnamed ask me “what are you looking for?” while I was looking for a referral. (I wasn’t even asking her to assess me, just to send me to someone who would.)
Some of us have literally been running for our lives since early childhood. And then when we succeed, the things we had to do to do so are held against our credibility.
I just feel so blessed that you wrote this post and that I stumbled upon it. I feel so enlightened just in the past 30 minutes than I have from all of the hate mail. It makes such a difference.
I don’t want my baby to think I hate him.
I want to heal him however I can but not to the detriment of his spirit.
I never meant to harm anyone and chose a public forum to vent some very personal feelings because I believe in writing with transparency, but that doesn’t mean writing without responsibility.
I am so grateful that you and your readers have taken the time to elaborate on my questions, to answer them honestly; you have all given me an opportunity to grow and learn and for that I thank you. I plan on reading through more of your work and even though I know that I will not always appreciate my son’s diagnosis, I’m confidant that I will be able to express it in a way that will not pierce at the very core of individuals who are on the spectrum and who experience autism in a way I never gave enough credit for.
I am at once humbled and fascinated.
Thank you again Rachel.
Jo,
I am so glad that you came here to express yourself, to ask questions, and to learn. I hope you’ll feel inclined to return, to ask more questions as they arise, and to share your thoughts. I believe strongly in grappling with issues openly and honestly while protecting the dignity of everyone concerned, and I do my level best to keep this blog a safe space for everyone.
Many blessings to you,
Rachel
From our point of view, you can’t “heal” us without eliminating part of who we are.
And to a point, it’s like saying that the point of school is to “heal” childhood.
It might help instead to think of it as giving your son the tools he needs to deal with the world. His problem is that the way the world is arranged is hostile to the way in which he thinks. That doesn’t mean it’s impossible for him to figure out how it works, but it will be harder than for others, it will take longer than others, the insights which make sense to him won’t be the same as for others, and it will never be natural to behave “normally”.
Even the highest functioning of us don’t think or react like most people, we don’t find things to be pleasurable which most people do, we can’t cope with situations which most people can. We can, to an extent, pretend to be like others. For a while, anyway. For those of us diagnosed in adulthood, we’ve spent most of us with no choice but to do so. And not knowing that we weren’t like those around us, we thought our distress and panic attacks and meltdowns were because we were broken failures at being people.
The trick was to figure out that we’re not like most folks. It doesn’t matter how much we pretend, we’re not going to like hanging out in noisy crowds or doing something disruptive to our habits. We can pretend to for a while, but then we know to retreat, or how long we can take before we need to hide in the quiet dark. It’s all about working with our neurology.
Which doesn’t mean giving up to it. It’s important to learn how to make sense of others, but not to pretend it’s not a skill. He will never be the same as his brother, but he can have his own successes. Work on those, even if they look tangential, and you’ll progress.
Ohhh I have been doing just what you said since my daughter was little, and boy, you would have thought I was asking them to let her parade around naked, when I try to explain to the schools, they give me the blankest of stares.
“Her brain doesn’t work like a ‘normal’ persons. I’ve worked hard since she was born to teach her how to deal with the world around her, and to make her differences work FOR her, and not against her. You will have to do the same in school. It will take her longer, and it will be harder for her to learn. You will have to compensate for that in order for her to not fall behind. You will have to make accomodations for her, for the things that she hasn’t yet gained control of; crowds, loud sounds, fear of bugs and things that move suddenly/randomly. You need to remember it this way; “She is not autistic, she has autism” Don’t let yourself start thinking of her as only AUTISM. She is ever so much more than that, if you give her the chance to be.”
And guess what? We’ve had amazing teachers, and we’ve had well…the other kind. You have to keep trying, even when it seems like all you get is the other kind.
I very much appreciate what you’ve written Rachel. I especially appreciate that you have brought needed awareness to broader goals and the important role they should play in these discussions. I’ve struggled to describe ideas I have about different approaches in a way that people won’t find personally threatening. There are so few people discussing these issues, and I believe the best answers will result from the most people being involved. Personalities being treated as more important than principles is one of the biggest threats to inclusion.
Much of what people are seeking in policy changes determine treatments for all disabilities which are hypothetical at best and proven quite harmful at worst. A more productive focus is on how ability and therefore, disability is seen in our culture and how that affects people’s opportunities. Many treatments are most heavily determined by these cultural views.
The best we can do for future generations is to encourage an environment of dignity. That is most likely when they feel empowered to express themselves and see how they have an influence in issues that affect them. By following the traditions that discourage people as they get older, we create fewer opportunities for younger people. It’s important to be more optimistic and empowering than that.
Another analogy with race: Black people cannot help being Black. It’s not something they chose; it’s something they’re born with. Same with being Gay, or being disabled. We can denounce certain behaviors, but not states of being.
I think the problem is the anti-PC backlash. Speech codes, sometimes necessary for civility, were taken to extremes in universities and other settings, in the 80′s and 90′s. So naturally, there came a pushback. But the reaction empowered truly vile individuals to justify their insensitivity on the grounds that they are striking a blow for freedom of expression.
In our increasingly debased culture, common sense and common courtesy have become uncommon. Boorish behavior shouldn’t be illegal; but it shouldn’t be condoned either.
(Oh, I forgot. I have Aspergers so I think no one has a mind, and I can’t empathize. I take my comments back).
Going back to the original “wish” referred to in this post (the idea of a conference in which everyone could speak their minds without anyone taking offense…) — There is a model called a “listening circle” that I’ve taken part in several times that works in person — I’m not sure how well it would work on line. It’s really very simple. but it demands a lot of the participants:
There is a pre-determined topic, say, “How do I feel about disability.” The participants sit in a circle, so that everyone is visible and, as a result, fully present. Someone is designated as time-keeper, and everyone gets a pre-determined time to say whatever is on their mind — say, three minutes. Everyone gets a turn — it works best when it goes around the circle so that no one is overlooked. If the time and will exists, a second go-round is possible.
The only ground rule is that there is absolutely no response to what anyone says — unless a person wants to use his/her time to respond to someone else. The point is to really listen to what other folks have to say — and not to argue with them. What this process eliminates is the back-and-forth that, when it happens, usually ends up with some people feeling unheard at best, and bullied at worst. The circle protects everyone.
This allows the people who feel offended to express their feelings without fear of being ganged up on or asked to take their outrage somewhere else. There is no place else!
Wow.
Yeah.
Tears.
Thank you.
Thank you, Jo.
[...] diversity and the art of offending someone (and how it’s not really something to be proud of) please read this excellent post and the comments below it. These are individuals who really have something to say and they deserve to be heard. I’m not [...]
It took me a while to get here, but I think I’ve finally arrived.
Thanks guys.
http://joashline.com/2012/03/the-evolution-of-an-apology.html
What an incredible piece — eloquent, heartfelt, honest, brave, and beautiful. May you go from strength to strength.
Hi Jo,
I’m an Autistic eighteen year old, which puts me toeing the line between adolescence and adulthood. The sentiments of those who’ve already written reflect well the kind of panic and hurt that I feel when I read things like “Autism can suck it.” As your son grows older, you should want to ensure that he knows that he is loved for all of him and for all of the parts of him and for all parts of his identity — not for some parts of his identity, or for who you may have wanted your son to look or act like.
Jim Sinclair’s seminal essay “Don’t Mourn For Us” puts it very well. (Sorry about the rainbow background on this page.) http://www.autreat.com/dont_mourn.html
Some more thoughts of mine on the kind of language people use around and about Autistic children: http://autistichoya.blogspot.com/2012/01/theres-something-wrong-with-you.html
Thank you for taking the to listen and engage.
Blessings and peace,
Lydia
I had thought about chiming in on this one earlier.
But I’m glad I didn’t. Sometimes it’s best just to shut up and listen.
Melissa…that’s exactly how I felt. Everyone was communicating it all so well. I just read and read and appreciated.
I will go back and finish this but I wanted to point ot that the author is using rather strange language in her analogy of being a White mother with an African American child. What if the white woman is British and the father of the child is Nigerian? Is the child still African American? What if the mother is white and Jamaican and the father is From England?Wouldn’t they be offeded at their child being presumed to be American if it is partially Black? The Term African American is just as exclusionary a any other epithet that seperates people. How about “ethnically mixed” as more inclusionary?
And yes, I fall victim to it every day, this is just an Aspie Linguistic pet peeve.
It’s an example. It doesn’t exclude other possibilities.
I have to say I agree with all of the above. I am a parent to an ASD son and possibly an ASD daughter (she’s being evaluated, I really pushed for it because it takes so long, but I’m still not sure if she is, or if she’s copying her brother).
I know I get it wrong sometimes. I know that I can write offensive and hurtful stuff without meaning to. Especially at the beginning of my son’s diagnosis since I was new to ASD and I only read things from other parents’ perspectives to try and find different ways to help my son.
I knew about NeuroDiversity from the outset, but did not take the time to learn much about it: I just felt relief that the movement was there, to envelop my son when he got older. Now that it’s been just over 11 months since his diagnosis, I have been able to make the time to learn about NeuroDiversity and the perspectives of the many Self-Advocates out there.
I love the analogy from the above poster who says that if you just made ableism analogous to racism or anti-antisemitism, people would shut up pretty quick. I also couldn’t agree more with what the author of the post says about how she doesn’t take offense for her, but for the whole community. That her offense is collective and political.
Mine is too. And while I may not be a part of the Autistic Community, I feel I am part of the Autism Community and if people say derogatory things, it makes me angry. Not for my son (my children) because they couldn’t be more perfect, it makes me angry for the whole community that the world at large would think such a thing is okay.
I know I get it wrong sometimes, and I might express myself in a way that could cause offense to others. For this I sincerely apologize and I do my best to mend my ways, rephrase things, delete things that I now realize were not expressed appropriately. I learn from the Neurodiverse community and I hope to continue doing so.
Nicely done Rachel, another fabulous post.
Rachel, thank you for this:
“every person I have ever met, disabled or not, has imbibed the poison of ableism. I certainly have. I fight it in myself every day. And the more I fight it, the more capable I am of living a life without shame, and the more empowered I am to make change.”
I was diagnosed with AS a year ago in my fifties, and while I am very glad to have the diagnosis as an explanation of my life, I am also dealing with the put-down messages from “my Inner Ableist”. The “Inner Ableist” tries to tell me that I am broken, defective, second-rate, a lesser being, that my wife must be disappointed that she married someone with a disorder, etc. As you said, we have all imbibed the poison of ableism, and that can be a huge struggle even to recognise and then to overcome.
What I like to say is “Offend people, make them think!” Certainly, it brings out the ugly in many people, as seen in this topic particularly, but when people are offended, it’s because something about that subject touches them.
They feel strongly about it, and they THINK about it. Thinking about something often leads to talking, or posting, or blogging about it. To sharing ideas and thoughts about it. And when people do that, they usually research it a little, to make themselves sound better.
The more you know about something, the more you WANT to know. Sure, many people also want to shove what they know down your throats as the only right way to think about it, but as they read, and talk, and become involved, they will meet many many more other people with many many more points of view. And just maybe seeing that those exist will be enough to open their minds.
Learning to think something new, that is totally different than what you *knew* to be right, takes time. The first step is experiencing other points of view. Like is too short to take the narrow view, but that doesn’t mean that other people don’t.
Offend someone – make them think! Thinking leads to learning, and that is NEVER a bad thing
Thanks, that is something that always bothered me too. Just like a redheaded Murphy isn’t always Irish. It isn’t *just* an Aspie peeve. It’s a grammarian peeve.
Until I was in my 20s, I didn’t get that race was not “where you are from” and I would say I was American. *sigh* I wish I had been right.
Thanks, Rachel. I’ve suffered from the “there is something wrong with you” voice stuck in my head my whole life.
Happy Purim to all who celebrate.
While the original quote feels offensive and wrong to me as well, I am not sure that is a good argument in itself. Because people indeed find a variety of things offensive, which may correspond to different moral systems. As a sex-positive feminist, things that I strongly believe are ethical and good (such as sexual education, any sexual practices that take place between self-aware consenting adults), are routinely offensive to a significant number of conservative people.
So if I hold an examined position that somebody else takes offense with, that would have no sway or impact on my view as it is not a valid argument to me. I would need the person to explain what is wrong with my position to begin any meaningful conversation.
I see parallels with feminism here. When a feminist writer explains things about male privilege, you think oh yes it’s true. But it can take a writer to explain it properly.
I think there are a lot of issues surrounding gender, race, sexuality, faith, and disability that folk don’t think about unless it is pointed out to them.
Rachel,
I’m not sure your post accurately represents the author’s claims in “No Offense.” In the fourth paragraph: “If you didn’t like what someone had to say, you would be free and in fact strongly encouraged to debate the merits of their position. But our conference’s one rule would mean that standing on the marble platform of deep and personal offense would not be allowed.”
The problem with using offense as a justification for change is that it relies on people’s abilities to listen to reasons (when given) and to evaluate the merits of their own behavior in relation to those reasons. I think the author assumes that if you remove the offense (i.e., the statement that one is offended) you will get less resistance to the reasons themselves; this would imply that the statement that you are offended puts the other person on the defensive, instead of in a position of listening, versus the real challenge to the person’s viewpoint putting the person on the defensive.
Ideally, being confronted with others who take offense at our words wouldn’t be such a problem that is shuts down communication; ideally, we could cope with this information and reflect on their reasons and decide whether we should or will modify our behavior. I think this is the ideal you are expressing, and if so, I would agree with that ideal. In a sense, I see “No Offense” as a strange, impossible short-cut to that ideal that doesn’t require participants to be emotionally mature–which is definitely impossible. I don’t think it would really work even if it could be orchestrated, because the assumption that “offense” is the reason for defensive posturing is an oversimplification; I think people are reacting to “offense” the way they do, because they are resistant to their expressions being challenged, because they are too emotionally immature to deal with the fact that they do offend, that they’re not always right, that their expressions can be challenged at all.
I agree that the ideal presented in “No Offense” is off-base, but I think the intention is not to silence or constrict the subject matter, but to require people to express the reasons for offense without expressing the offense itself, in the belief that resistance is to offense not criticism.
I am so grateful, for stumbling across this site. I am also eternally grateful for the eloquent, clear concise writing of such Talented posters.
I am the proud mamma bear of two children now in their teens. My son has a long list of labels and diagnosis’s, of what can I say, he doesn’t fit in the box you want him to. In you, I mean professionals, general public with no experience and yes my own family. My son is kind caring compassionate funny and I think very handsome. Yet people and again I am generalizing from my own experiences, generally see a short young man with Down Syndrome, who tic’s spits screams and yelps. I have always said I have never had a issue with his labels ( ASD, DS, Torettes,Brain Damage Deaf Non verbal blah blah blah ) I have a issue with how the rest of society expect him no Demand him to behave. My son may spit, tic, throw food. My daughter ( who has no labels attached) has been known to swear rebel scream and generally behave in much the same fashion to some degree, yet this is deemed acceptable by society. Shes young, going through a stage, its adolescence. When my son was going through much the same stage in early teens, puberty. My brother took me aside to almost demand my son should be place in a secure home. As a stupid Dr. we were seeing ( with NO learning disability or ASD experience) had suggested an inpatient diagnostic center 400 miles from my home, which of course I flatly refused. He uses this inept Drs suggestion as justification for his words, and confuses a diagnostic in patient stay with total institutionalization. After trying to explain several times to my brother, that I may have to face this scenario one day, right now in his kitchen I wasn’t prepared to make a life changing decision. I also tried to explain, that I love my son just as much as he loves his children and would he so calmly consider sending them to live with total strangers. I also tried to explain that abuse can and does happen within such settings and as my non verbal son’s voice, I wasn’t yet prepared to even consider such a option. I did try to explain how, it may be better to have support so as to remain my son in his own home. I also silly me, said how it can be hurtful when people stare, to which his response was “look at him, spitting and twitching I’d stare”. Another massive mistake of telling my family of a prior incident at school where my son had hit a child on the head and this poor boy had had to get stitches. His exact words were my son should not be in society as he may hurt or even kill someone. This from a man who in his teens bombed the neighbors letterboxes daily. Concussed a neighbor throwing eggs at her. Destroyed public property by either Fire bombs or sheer vandalism. Put animals in the micro wave for fun and many other cruel sadistic things to myself animals and the general public. Yet again he was going through a stage, he was a teen, a boy all normal. Because my son tic’d and spat on the xmas turkey, he should be locked in a home, they even offered to pay. I have now been totally cut off from my entire family and have been so for three years, simply because I was offended by what they had said. How dare I be offended by the truth I was told. Yes my son is Autistic, Has a extra Chromosome, suffered lack of oxygen due to a cardiac defect, Is Deaf, Has Tourettes. I have NEVER been offended by any of these things, these labels. I am not offended by my son, who these labels are a part of. I am offended by the one sided ignorant views, of judgmental people, who in fact have at one time or another behaved in much the same way. During this visit with family my other self righteous brother was visiting with his daughter, who by a DRs standards would be diagnosed severely obese. No one thought to take my brother aside to, from the kindness of their heart tell him to take her to a fat farm. No he would have been mortified offended and down right outraged. What is the difference. If telling the truth is an excuse, well I think society would totally fall apart. Finding this site and reading these posts, re-enforces in me, what I really already knew. Its the proverbial “their” problem not ours. Sadly they missed seeing my son,, hearing his giggles, getting a surprise cuddle. My son has LOTS to offer society. My daughter and I accept and love him totally as he is.
Thank you