U is for Unity

UThis is an entry for the Blogging from A to Z Challenge. I didn’t quite make it in April. I moved in May. I’m finishing the alphabet in June.

The ABCs of Autism Acceptance series has been picked up by Autonomous Press and will be published in book form, with additional material, in June 2016. Watch for it!

U is for Unity

“The point in history a which we stand is full of promise and danger. The world will either move toward unity and widely shared prosperity – or it will move apart.” – Franklin D. Roosevelt

Which direction have we moved since Roosevelt’s warning?

I look around me and see a world that is struggling to move toward unity but which still has a long way to go toward that goal. Compared with that point in history at which Roosevelt was speaking, we have made much progress in unity among people who are racially diverse, who adhere to diverse religions or no religion, who have different genders. We have passed ADA and work daily to enforce it. We have taken steps to address class and income diversity. Yet we see racial conflict daily and the United States is still a place where white people benefit, mostly unconsciously, from institutionalized racism. We still see battles between adherents of different religions, mistrust and discrimination against people based on religion — particularly discrimination directed toward Muslim Americans, mistrust and fear directed toward atheists (an academic study of public opinion found that more people would trust a known rapist than would trust a known atheist), employment glass ceilings for women and those of minority genders, ableism and abuse of disabled people both in institutions and homes, sheltered workshops where disabled people are paid pennies for their work, and the income gap is wider than it is been at any time since the Great Depression.

Autism acceptance demands joining the struggle toward unity. When I call for unity, I’m not saying that everyone should be the same as everyone else. I am talking about the kind of unity composer Felix Mendelssohn spoke of when he said, “the essence of beauty is unity in variety,” or the unity of George Herbert Mead’s  declaration that “society is unity in diversity.” I am calling for an understanding of our interconnectedness coupled with a respect for human diversity in all spheres of our being, including, of course, neurodiversity.

In my experience, Autistic people and our allies are too often isolated from the larger disability community. Ari Ne’eman, co-founder of the Autistic Self-Advocacy Network (ASAN) and the first Autistic person to serve on the National Council on Disability spoke of this separation in a roundtable discussion in 2012, saying:

I think we have a tremendous amount to learn from the larger disability world, and I fear this is something that autism does not do a very good job of. No one who had absorbed the lessons of Willowbrook and Pennhurst would think it was a good idea to build special “Gated Communities” to house autistic adults and others with intellectual and developmental disabilities. No one who knows the history of the Jerry Lewis telethon and the objections made by people with muscular dystrophy to being portrayed as pitiful, “half-people” by its star would ever conceive of something like the “I Am Autismvideo. No one who knew the names Ed Roberts, Judy Heumann or Justin Dart and the history of all they accomplished for people with disabilities would ever doubt the meaning and importance of self-advocacy by and for us, instead of on our behalf. Yet, these are not things we think about or have even heard of in the autism world.

Things are slowly changing since Ne’eman made these observations, but still so much of the world of autism is isolated. Mainly it is Autistic academics and activists who are venturing beyond our borders, but the larger Autistic/autism community is opening to wider unity all the time. We are forging close alliance with others with developmental disabilities, particularly people with Down Syndrome and Cerebral Palsy, but our connections don’t stop there. The larger disability community has battled an internal schism for years and the time is ripe for Autistic activists to join the fight against internal ableism. For so many years, many of those with mobility disabilities and other physical disabilities have said things like, “my body is impaired but my mind is strong and good.” This is a very understandable thing to say, but it created a climate unfriendly to those with neurological and psychiatric disabilities. The larger disability community is strongly challenging those attitudes now, though, and as a result there is increased unity among people of diverse disabilities, increased solidarity, increased ability for all of us to work together for the rights of all of us.

It is time for Autistics and our friends, families, and allies to join the larger fight. It is time for us to turn our attention outward and work to help others as we allow them to help us. We are all connected through the shared experience of disability. Our disabilities are different — just as each Autistic person has their own, individual experience of autism — but the stigma and social barriers we face are strikingly similar. Autistic people and the rest of the disability community have much to offer each other. But I think many Autistic people and their supporters shy away from working within the larger disability community because of fear of that word, “disabled.” That fear points to an internal division within the Autistic/autism community that needs to be mended as well.

Within the Autistic community, there is a schism not terribly different from the brain/body schism the larger disability community is working to heal. Within our community, there are those who insist on only portraying autism’s strengths, who fear words like “disability,” who cling to the label “Asperger’s” which is no longer a diagnostic category and is in the process of fading into the past as a piece of medical and autistic history, not unlike other terms such as “dementia praecox,” “manic-depression,” or “sexual inversion.” Now that all forms of autism have been united under a single label, the main purpose (other than historical) of the word “Asperger’s” is to draw an “us vs. them” distinction within the neurotribe of autism. It is a “dog whistle” that speaks a code of “functioning labels” and  supremacy. It is a way to say, “don’t mistake us for those people who wear adult diapers and a head-restraining device.” It is a way to maintain division within the community.

And division will not move us closer to unity.

And Autism Acceptance demands a call for unity.

Autistic people who say “different, not disabled” need to stop and think about the message they are putting forth. Because of their fear of being considered less-than, because of their fear of taking on the stigma fellow Autistics  live with every day, because they are hovering at the fringes of activism and advocacy, trying to “pass” as non-autistic and focus only on Autistic strengths while often diminishing or dismissing Autistic needs, they are actively working to increase division in the community. Those who don’t have the privilege of passing, even for a short time, are left out of their description of Autism. In insisting that autism is not a disability, they drain the compassion of those who would otherwise want to assist and accommodate us. In insisting that autism is not a disability, they help make the overall movement of autistic advocacy and self-advocacy look like a game or a collection of lies — anyone who knows or is an Autistic person who cannot pass and requires accommodation can see right through that game and can see the harm it does to the larger Autistic community.

Autism is a difference AND a disability. Disability does not mean “incapable of anything.” It does not mean “less than.” It simply means having some condition that contributes to some limits in a person, both inherently (such as not being able to speak or not being able to recognize faces) and socially (such as being passed over for jobs because of a cultural lack of belief in the competence of a particular category of people.) When Autistic people face challenges such as difficulty in face-to-face conversations and social limitations such as only 15% of people diagnosed Autistic having full-time jobs at the level of which they are capable of working, autism is undeniably a disability. Arguing against the disability of autism is arguing against a united voice that advocates for the needs of all of us. Arguing against autism as a disability is arguing against our unity.

It is not just unity within and unity with the larger disability community that we are called to support. We need to seek unity with all marginalized people, all people who face oppression. We need to seek unity with People of Color, with people of all genders, especially transgender, non-gender, intersex, and other minority gendered people. We need to seek unity with everyone who suffers discrimination for who they are. It is in this way that we fight against a society that holds up a monolithic notion of “normal” and “perfect” that is oppressive to everyone, but especially to those who fall outside society’s “circle of virtue.”

It is only through seeking unity that we can protect other vulnerable and marginalized people and, in fairness, hope for them to protect us. Many people in our own neurotribe are multiply marginalized, so supporting the rights and needs of impoverished people, People of Color, people of diverse gender expressions and so forth, we are supporting and protecting our own Autistic siblings as well as reaching out to the larger community and working toward a realization of that interconnectedness all humans share. Seeking unity with all people helps build that just and prosperous society Roosevelt dreamed of. Seeking unity makes us all part of the solution, not part of the problem.

It is worth paraphrasing Martin Niemöller’s famous poem about Word War II Germany and persecution under the Nazi regime:

First they oppressed the People of Color
and I did not speak out
because I was white.
Then they oppressed the Transgender People
and I did not speak out
because I identify with the sex I was assigned at birth.
Then they oppressed the Psychiatrically Disabled
and I did not speak out
because I was not diagnosed with a mental illness.
Then they oppressed those Autistics Who Needed Round the Clock Care
and I did not speak out
because I was able to live independently.
Then they came for me
and there was no one left
to speak out for me.

This is our lesson, this is our mission, this is our clarion call: unity.

 

 

 

 

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20 responses to this post.

  1. I completely disagree that the term “asperger’s” is on the way out, and that its use is negative and only serve to create divisions. The diagnostic manual may be considered the “Bible” of American psychiatry, but it doesn’t dictate everyday language, and words that are descriptive and useful don’t just fade. I’ll certainly continue to use Asperger’s as the most accurat and useful description of my version of autism (even though my diagnosis is now officially ASD); it says a lot more about what my types of difficulties and my level of need for support is than just “autism”. The professionals I know (which admittedly isn’t that many) also still use it at least in an unoffical, descriptive way. For example, the local disability employment agency has a person dedicated to finding job for “aspergers”. People with Asperger’s can mostly be placed in relative normal jobs with accomodations (and some without of course, but they wouldn’t go through disability employment). To lump everybody with autism together in one pool may make sense from an idealistic, political and diagnostic viewpoint, but in a practical everyday sense makes no sense, just create unnecessary language taboos that make people wary of communicating.

    Same with the current villification of functioning labels. Yes, I essentially agree with how they can mislead people into a binary, black and white and oversimplistic perception of autism, and those aspects should be addressed when using them. And no, there isn’t any one universal aspect that can be used to divide “high” and “low”. However, it is a fact that there are different degrees of severity of autism with different needs for support, and banning language that enables people people to talk about that reality and categorise its elements severely undermine peoples’ ability and courage to communicate within the culture/s that’s declaring war on “ableism”. I know what I do when I meet that sort of collective-control attitude: I leave, and keep using whatever language I find most useful to express the kind of reality I observe and experience. That’s why I rarely take part of the dialogue at all (this comment being an exception). I’m guessing a lot of people just get scared off, and that’s why the overall impression of the culture is one of unity, as if everyone agree on the same slogans, the same interests. Overall, I think all these attacks on language and “inner ableism” that are currently strong in online autistic culture cause a lot more harm than good.

    • It is a shame that you rarely take part in public dialogue about these issues, because that means you are sitting back and letting others set an agenda with which you disagree. Any public consensus that exists is there because people talked about the ideas, presented different opinions, and worked together to shape our culture of neurodiversity and autism acceptance. If you feel that culture is mostly going in the right direction but is missing the mark in many ways, you owe it to your beliefs to defend them in some way. Blog about your perspective. Join the dialogue. I often say that the world needs multiple perspectives and all Autistic voices. If this isolated comment you made here is your only contribution to culture and community, you are letting others hash out the issues without you, then frowning at what they worked out in your absence. Join us in a more engaged manner and help shape the discourse.

      • My point is that the tendency to language policing – as in saying that now using the word asperger’s is out, and using it means you’ll brand yourself as belonging in X category of ableist or whatever other bad guys we’re at war with now – doesn’t encourage “all autistic voices” to participate. It encourages uniformity, as if we’re all are soldiers in the same war, and must all shout the same slogans in unison. The culture may advocate diversity, but it seems clear that anyone who don’t conform to whatever current wave of lingo and politics that’s on the agenda will be negatively stereotyped as some category of enemies/wrongness.

        I read an article recently that expressed some of what I’m trying to define, better than I can: ‘Call Out Culture’: The Case Of Ableist Language (also the article it is inspired by and links to). It may not be precisely the same thing I’m wanting to define, but it is very similar.

        People who don’t like the tone of a particular debate are of course free to leave, or not enter in the first place … that’s their own wise personal decision to make, and I think that’s why neurodiversity culture(s) seems so surprisingly and increasingly uniform (regardless how many traditional divisions it crosses – racial, gender, types of disabilities e.tc). When a culture seems very uniform in opinions, when most of the public discussion is “me too” kind of statements, and people seem to thrive on joining in on collective attacks and contempt for some categories of “wrong people” (out in the wider world, and inside the culture itself)… when it is easy to end up in one of those “wrong people” boxes and get hostile collective assumptions projected on to oneself (being negatively stereotyped and attacked)… then obviously anyone who don’t fit that particular cultural template that is set up and advertised to the world, or who feel they may get attacked for their opinions or word use, accidentally touching upon some intra-culture taboo, are unlikely to join or stay in that particular culture/debate, that is just common sense and not something to frown upon.

        It is up to any person to set their own personal priorities and decide which battles to pick: to consider the costs (stress and agitation, drain on resources, time et.c., and other worthy cases and priorities missing out) against potential outcomes, and make the wisest possible decision. As for me, the personal cost of participation can be quite high for various personal reasons. So I try to consider carefully whether it is worth participating in the first place, or if I should prioritise other things. Autism awareness and acceptance, disability culture e.t.c are not top priorities for me, not because they are not important at all but because I find other aspects of life more interesting and also more needy, so if I’m up for advocating I’m more likely to do so in different areas (not so human-orientated). So therefore, and for all the reasons described above in this comment, I’m not usually participating in debates in the online autism community (although it also depends how that is defined).

        It is true that when not participating in any particular public dialogue, others set the agenda within that particular culture (and it may spill over into the wider world to some extend). However, if I don’t participate in a particular culture or dialogue, then that doesn’t however mean that I let other set my agenda, dictate what language I can use or speak for me. The world is full of public dialogues going on all the time, and it is completely impossible to take part in all of them, yet that doesn’t automatically imply agreement (even when actually technically belonging to that segment in some ways). In most cases, it simply means being somewhere else, choosing something else. Then if I come back and find out somebody in my absence have decided something that affects me, I still have the right to reject it if I don’t agree. There’s no such things as “you weren’t here, and now THIS is what we’ve decided you can say and do, and if you don’t then THIS is the category we put you into and THESE of our assumptions will stick to you and cover who you are a person”. I mean of course people can say that, but it isn’t valid.

        All that said, it may be a good idea to write a blog post with some of these thoughts. As the things look right now for me personally, and considering my long backlog of draft posts, it isn’t likely to happen soon but it may still be a good idea.

        • Oh, people can continue to use the term Asperger’s if they want. I am not being language police. But I have a freedom, too, which is to form an opinion of them based on the language they choose.

          Just yesterday, someone I know was defending the Confederate flag and used the phrase “outside agitators” when he did. It’s a perfectly good phrase in the English language, but it communicates more than the idea of people coming from a different region to stir up trouble. It also communicated a lot about the person choosing to use that phrase.

          Asperger’s is similar. *I* did not decide and declare that using a particular term colors others’ opinions of a person. That decision was made for us all by countless people, such as those cited in the essay, insisting on using a particular type of language while at the same time expressing ableist and harmful ideas. There was no committee sitting around deciding what words were okay or not — the decision was made by individual people, just like you, insisting that the word is very important because it shows how different they are from other Autistics, just as you said, and including divisive and harmful ableist rhetoric in their statements, just as you did.

          Your first response to my essay actually underlined the points I made rather than refuting them. You demonstrated exactly why hose words have become tainted by using the. In the exact tainted way I discussed.

          In simpler terms, if you are distressed that people like me are warning others about the ableist nature of certain words, the person to take to task for the linguistic problem is yourself (and the many others like you who cling to certain words that indicate an alleged superiority.)

          You have set your own agenda; I have not. You are upset with me for talking about what you are doing. I hope you take some time to think about all this. That said, definitely do blog about these ideas. Put your beliefs to the test of open dialogue. You will either change the course of the activist community or you will collect a group of like-minded people with whom you feel more at home. Either way, your outcome will be positive.

          • I don’t know anything about the Confederate flag and the related term (I’m not American), but “outside agitators” just from the sound of it, sounds like an inflammatory term designed to devaluate a group of people and their opinions. That isn’t at all similar to using Asperger’s as a descriptive term to name a specific subset of autism with a specific set of challenges, overlapping with but not identical to other subsets of autism.

            Asperger’s is similar. *I* did not decide and declare that using a particular term colors others’ opinions of a person. That decision was made for us all by countless people, such as those cited in the essay, insisting on using a particular type of language while at the same time expressing ableist and harmful ideas. There was no committee sitting around deciding what words were okay or not — the decision was made by individual people, just like you, insisting that the word is very important because it shows how different they are from other Autistics, just as you said, and including divisive and harmful ableist rhetoric in their statements, just as you did.

            The set of assumptions right there in the quote above (and in the essay) is wrong. Like “Anyone who uses *This* word belongs in *That* category, and therefore is in *This* way (assumptions applied), which means that they’re Bad” (ableist/divisive et.c.). The problem is that any particular term may be used by a wide variety of people in different ways and in different contexts, and while you may be right in your judgement about some of these uses in a certain context and by certain people or groups, you’re just as wrong about many others. Stereotyping like that is harmful for the community for creating an atmosphere of fear and aggression, for the persons being stereotyped/vilified/alienated/or even attacked (unless they conform to the most current language rules!), and for the persons doing the stereotyping for losing their perspectives and feeling like they’re at war and surrounded by enemies. Even if here and now it gives a warm & cosy collective feeling of being on the Right side in a War against Wrong, over time strips the group of diversity and render it increasingly aggressive, with people on the lookout for the next outer & inner wrongness to attack.

            Also: targeting useful, descriptive words doesn’t remove ableism. People who have a certain attitude or opinion don’t change it if a word they want to use is cancelled from everyday language, they just use a new word based on what they want to say or what they need the word for, and after a while the new word gradually inherits all the old word’s meaning, and nothing has changed.

            And as I mentioned in my first comment, where I live the term Asperger’s hasn’t gone out of use even by professional service providers, simply because they need to be able to name different types of support needs and constellations of problems in order to do their work. It is a different context from the one you refer to as a reason for abandoning the term, but it is no less real. Do they have a good understanding of what it means, of the whole concept of autism? No. Would it change anything to say that they can’t use that word? No. And they’d need another one in its place that means precisely the same thing. That’s just one example. There are many different contexts in which any particular term is being used, and I’m not doubting that the one you mention is real but the set of assumptions you make about a whole bunch of varied people and their motivations and attitudes, is wrong. I don’t expect you to listen or accept any of what I’m saying, but now I’ve explained what I mean and why. So have you, so I think we can end the discussion now.

          • Oh, you’re not American. Never mind.

          • I am Danish and live in Australia.

          • Right. Totally different culture and different language use. Like Churchhill said about England and America, “two countries divided by the same language.” We’re not really speaking the same language or from the same cultural context so of course we aren’t communicating well. Apologies for that.

          • Yes, that is true … You’re speaking from a context I can’t see, so what you’re saying probably makes perfect sense where you are, given the surrounding subcultures et.c. That’s the problem with the Internet being so damn global;-) (and also America-leaning). I wasn’t aware that you assumed me to be American. Since my first language is not English, I will take it as a compliment:-)

          • Yes, your use of English is excellent and does not mark you as a non-native speaker.

          • Thank you.

  2. Posted by christyautisticwalk on June 24, 2015 at 6:12 pm

    Reblogged this on autisticreformedcalvinist.

  3. Thank you for this, Sparrow!
    Thank you for you <3

  4. Reblogged this on Melissa Fields, Autist and commented:
    Thank you for writing this series, Sparrow. <3 <3 <3 Very well said!! :) I can hardly wait to buy the book of this series when it comes out. You are an awesome person and an awesome friend to me!! :) <3 <3 <3

  5. Thank you Sparrow.

    The danger of polarizing Asperger or “high-functioning’ (HF) autistics vs. ‘other’ autistics is plain to me. Or was that good vs. bad? Useful vs. not? Better vs. worse? And this is the crux of the problem.
    When used by autistics, there is a sense of superiority in that attitude which spreads to the rest of society. It says – “Yes, I’m autistic, but you know, I’m Asperger (or HFA), so I’m *not that bad*. Not like *them*.”
    What if instead, we designated different autistic people as some being able or unable to do such and such thing in such and such setting? How much of an effort would that be? Wouldn’t it be just as efficient, and address the reality of everyone being unique?
    Discrimination comes in many forms. And when it comes from within, the stigma is amplified.
    Here’s an example:
    I discussed today online with a mother of three children. Everyone in the family is autistic. She designates ‘everyone else’ as Asperger, and sets one of her daughters aside as HFA. She talks about this girl’s lower tolerance to change and higher anxiety than the rest of the family. And then she designates her as ‘difficult’, and blames, and berates, and bases all of this on the one terminology excuse – the daughter is ‘autistic, not Asperger’, and this is where she sees a problem. Not her interface issues, not her unmet needs. No. She is considered ‘autistic’, and not ‘Asperger’, and that in itself means that the problem becomes ‘who’ she is. She becomes the problem, the other. Another example of ‘us’ vs. ‘them’ in a societal group.
    You see where I’m going with this. When we use words to categorize things, to make things easier, we forget that people are not things, but unique humans. And community cannot stand when it’s split into ‘us’ and ‘them’. Inevitably, the weaker will suffer, and the stronger, if not careful, will make their privilege stand for division and oppression.
    Agreeing on principle that functioning labels should be avoided is one thing. But it means nothing if they continue to be used because they’re convenient.
    Just because it’s somehow practical and self-advantageous for some to classify people based on performance doesn’t mean it’s right, correct, valid, or especially, good.
    This is the whole idea of unity – when we stand together, and apply our beliefs in everyday life instead of taking the shortcuts of hurtful stereotypes and classification, this is when real change can happen. Words matter, and the attitudes that go with them are not separable.
    It is precisely *because* we have different abilities that we should not not use hierarchy defined by others to describe what separates any of us, and instead stand together for what unites us. Together we are accountable for one another, and stronger.

    • Thank you. I like to speak in terms of strengths and needs for accommodation or support. For example, I’m not a functioning level, I’m a person who is capable of university level work but requiring significant accommodation to do so. I am able to drive when I am not too stressed out but I need support to make telephone calls. I need accommodations in recognizing people and accommodations for voice conversations (and AAC for voice conversations during times of stress when I become unvoiced, sometimes for hours, sometimes for days) but am generally good with one-on-one conversation whether I’m voiced or using AAC, although I am unable to follow group conversations and require captions for television and movies. I can shop for my own groceries and most of the time I can cook without burning my food although I burn about 1 in every 5 meals that require heat to prepare. I need support to remember to eat and sometimes support to stay on task with eating until I am done.

      That just doesn’t translate to a function label. And a function label might fool someone into thinking they understand me but all this detail would be lost, so they would be interacting with an imaginary me, not the real me.

  6. I call myself an aspie as well as an autie. For me they are both fine. I do agree that common cause would led us to join up with other folks that are “otherly abled” or just not white heterosexual. BTW i also identify as a person with a mental illness. Basically I just want people to love each other. It is hard in the beginning but it is worth it. OTOH I don’t expect or require it. It took what it took for me to get this accepting and i still have a ways to go.

  7. Posted by splendidcolors on June 27, 2015 at 12:39 am

    I’ve noticed that the people who insist on identifying as Asperger’s are most definitely trying to set themselves apart from autistics who need care and can’t pass as being merely rude neurotypicals. Also, the professionals who insist on saying I have Aspergers (original DSM-IV diagnosis) and am NOT on the autism spectrum are typically trying to deny me some type of services or accommodations.

    “You have Asperger’s and that isn’t a disability–Bill Gates has that–so no, we will not help you get accommodations on the job.”

    “You have Asperger’s so you do not need help communicating with the doctor–it’s not like you’re autistic–you just want attention.”

  8. Posted by autisticaplanet on June 27, 2015 at 4:02 pm

    Excellent post! I am glad you touched on the issue of those with ASD who discard the disability aspect. Some with ASD like myself will always need a lifetime of support just to survive. Have you or would you ever consider bringing up the need for varied housing options for those with ASD? This is a huge issue for me as both my parents are deceased and my sister is 12 years older than I am. Future planning is so important, but the present reality is that what is affordable for a semi-independent person like myself is noisy section 8 apartments chock full of dogs and small kids. The other 2 alternatives would be equally overwhelming: institutionalization in a nursing home or state hospital or a group home. I cannot be the only one with ASD who needs a low-sensory environment in which to sanely & safely function.

    • Excellent topic and, yes, I will add it to my blogging list of topics. One option some people I know use is co-housing. You match up with someone of a suitable temperament and live in their house as sort of a hybrid between boarder and friend. You pay reasonable rent and live as if you were a family member, with other household members helping with your support needs but respecting your privacy. The people I know who are doing it as guest or host all love the arrangement.

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