Banging My Head on the Neurotypical Wall.

January 22, 2016 11 Comments

This past summer I served on a committee which was made up of special educators, parents of disabled children, and fellow service providers. One other committee member was disabled. I was the only Autistic member. Typically I stay away from committees because they are not very accessible to me; too many conversations, a maddening about of words, rules and procedures which are counter-intuitive to me. Committees require a measure diplomacy and subtlety which do not come easily to me. However, I joined this one because I felt that Autistic representation was critical to the committee’s mission.

Since all of the committee members were involved with neurodivergent individuals in some capacity, I hoped that they would have awareness or at least a willingness to learn about the critical importance of assuring accommodations which create an accessible space for their one Autistic member, and by extension all neurodivergent people. Unfortunately, I found just the opposite. I found an impenetrable wall of neurotypical privilege between myself and the other committee members as my attempts to assert my ideas often went unheard. My input was often ignored, framed as “biased” or more often or not, repeated back to me in a “corrected” form where the other committee members told me what I “meant to say”. I became uneasy about speaking up, and then all alone when I did speak up. The experience left me feeling crushed under the weight of the systems which serve neurodivergent people, but are managed and controlled of the most part by neurotypical and non-disabled people. And perhaps worst of all, people who can’t or won’t acknowledge how it is problematic. It seemed to me too easy for the other committee members to hide comfortably behind their neuro-normative groupthink.

At one point a committee member said, in the middle of a point I was trying to make, that, “Everyone is a little Autistic,” I was stunned. I immediately corrected the person; either you are Autistic or you are not Autistic, but it is absurd to state that it is something that all of us are. It was all the more maddening because none of the other committee members seemed to think the comment was disrespectful or inappropriate. No one said anything, which effectively erased my disability from their discussion. If everyone is a little Autistic then what is the point of listening to an actual Autistic voice? What bothers me the most is that all of the committee members have a stake in lives of neurodivergent people, yet they seemed oblivious to how their treatment of their one neurodivergent member reflected on the treatment of all neurodivergent people, including in some cases, their own children. They not only lack the actual experience of neurodiversity [despite the claims of being “a little bit autistic”], but many also lacked any understanding of disability theory and history whatsoever. Without understanding, our history, how are we to providing safe and inclusive space for neurodivergent people?

How can we ever start to discuss empowerment without first demonstrating a desire to give up power so that others can take part? In order to tear this wall of neurotypical privilege down you can’t simply give a neurodivergent person a seat at the table and believe your responsibility ends there. Forcing neurodivergent people to operate in neuro-normative spaces will always create a disadvantage for us. It’s unfair. It acts as a barrier and inhibits our ability to fully use our strengths. It is the responsibility of neurotypical and non-disabled people to understand the full range of accommodations and assure they exist in the first place. It should not be the responsibility neurodivergent people to constantly remind everyone. Neurotypical and non-disabled people have the responsibility to understand our history in detail [institutionalization, infantilization, segregation, sterilization, eugenics, etc.] and question how that history and its narratives contributes to their own understanding of our lives and how this narrative continues to disempower us. Neurotypical and non-disabled people have a responsibility to listen our voices without filtering out the meaning of the message in order to make themselves feel more comfortable.

This metaphorical, neurotypical wall erases our voices and the validity of our lived experience. Creating spaces where our experiences are listen to and valued will help bring the wall down. Until them, my head will remain really sore.

 

The Nuerotypical Wall

 

Brent White is Autistic. He designs and directs adult programs for intellectually and developmentally disabled adults for the non-profit Ala Costa Centers in Berkeley, California.

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Inclusion Doesn’t Mean That We Become So Invisible That You Don’t Ever Need to Think About Us.

April 15, 2015 3 Comments

Our adult transition and adult day programs are both community-based. Our participants and teaching staff constantly bump up against the negative stereotypes and everyday ableism that many community members harbor towards intellectually/developmentally disabled individuals. For example, two incidents occurred last week. In one, a community member came to my office to express concern that one our adult participants was “allowed” to independently take a dance class without direct supervision from her staff. The staff, who were in fact, waiting respectfully right outside of the dance class. Two other teaching staff members were yelled at by an AC Transit bus driver for “allowing” participants to ask the bus driver to lower the wheelchair/accessibility ramp and to tell the driver where they were going. My teaching staff does a remarkable job of remaining calm when they are confronted by community members, but often those community members are handed my business card and asked to call me directly.

I know I am supposed to be diplomatic and I try, but I see, hear, and feel the same ableist nonsense every day. It is hard to encounter the same misconceptions over and over again. So, I thought I would give the community some tips on how to deal with situations they don’t understand:

  1. Slow down, listen, and be patient. This will go a long way toward helping you understand what someone is trying to communicate with you. The guideline we use in our programs is: when you ask someone a question or make a request, wait as long as you possibly can for a response. Then wait a little longer. Intellectually/developmentally disabled individuals process information differently and it may take us a little longer to respond. There is nothing wrong with this.
  2. Our participants are adults. They deserve the same respect as any other adult. Intellectually/developmentally disabled individuals have been historically infantilized- framed as children no matter their age. This is unbelievably disrespectful. You should stop this.
  3. If you have a question about one of our participants, ask them. Don’t ask their teaching staff. It is disrespectful to the participants and the staff is just going to refer you back to the participants anyway.
  4. Presume competence. This one is easy! Presume that each individual has strengths and the capacity to learn and grow. Of course it might mean that you need to rid your mind of the negative stereotypes about intellectually/developmentally disabled individuals you have come to accept as truth, BUT it will free your mind. I promise.
  5. It’s OK to be different. Remember just because someone doesn’t do something in the manner or the order in which you do it, doesn’t mean that they are doing something wrong.
  6. Communication isn’t just the use of words. Communication is deep and complex. Words are limiting, but watch someone communicate with their environment by using their body, or flapping their hands or arms. Listen to the language of stimming- it is often more beautiful than words.
  7. We all have the right to fail. Our program believes in the dignity of failure. This is how we all learn! One of the biggest burdens the special education system places on our backs is that everyone is afraid to let us fail. Failure, dealing with failure, overcoming failure makes us stronger. It makes us adults.
  8. We all have the right to take risks. We learn by doing, by making mistakes, by struggling and finally figuring it out in our own way. I’m not talking about dangerous risks, I’m talking about the risks it takes every day to be a human in the world: to ask for a job; to ask someone to be your friend, to ask for a kiss.
  9. Trust in the power of struggling. The world for intellectually/developmentally disabled individuals is more often than not, chaotic. It may not appear that way to you, but it is to us. We learn to adapt and the ways in which we adapt are pretty amazing. The way we measure success is by how well someone adapts as opposed to how well they can pass for neurotypical.
  10. We become self–determined, empowered individuals when we are provided spaces to try and succeed. This cannot be accomplished by being shuttered away in some classroom or some other incarnation of an institution. We need to be in the community, working on skills hands-on, and in real-time. And just to note, this is not accomplished by herding large groups of disabled people around in vans under the ever watchful eyes of hovering staff.
  11. The community belongs to us just as much as it belongs to you. I know this is hard to understand, but just take a deep breath and accept it. We have every right to be as deeply included in the community as anyone else. When we talk about inclusion we are not talking about passing as neurotypical. Inclusion doesn’t mean that we are invisible to you and you never have to think about our lives, our history or your part in continuing to pathologize, devalue, infantilize, and isolate our lives.

When you think one of our staff isn’t supervising, you are incorrect. We believe that our participants are all adults learning how to adapt and be in the community to best of each individual’s ability. We give participants respect; we do not hover, restrict, constrain, shame, or in any way coerce participants. We support through mindfulness, acceptance, empathy and presuming competence. We believe that inclusion is an equal partnership.

And if all of this seems too difficult, then try being kind instead of patronizing, this is always a good place to start.

Sincerely,

Brent

 

acceptance-revised

 

Brent White is Autistic. He designs and directs adult programs for intellectually and developmentally disabled adults for the non-profit Ala Costa Centers in Berkeley, California.

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Autism is Family: A Guest Post by Sonia Boué

January 7, 2015 2 Comments

I began to write this blog early this morning; by the afternoon it appeared that I might be psychic. One Dr Manuel Casanova, neurologist and US university professor had taken to cyberspace with some pretty toxic yet surprisingly disjointed views on what he considered to be the blight of the neurodiversity movement [[you can read the post here, but Trigger Warning for its ableist language]. It’s distressing, but the only thing to do is blog back with a firm rejoinder on the joys and benefits of neurological variation and the importance of what autistic adult self-advocates do best – giving a window into an important cultural and perceptual difference within the human population.

One of the most striking features I’ve found amongst this marvellous online community of adult bloggers is the urgent desire to communicate about what autism can be. It’s a top class ‘world service’ in my view, which reaches out to it’s own as a support network but also seeks to educate what has come to be called the neurotypical (NT) world – if only it had better ears and eyes sometimes. Blogging has emerged, particularly strongly in the US, and partly in response to heinous misrepresentations of autism by the major US ‘charitable’ player for autism, Autism Speaks (A$), whose negative rhetoric includes a recent comparison of autism with leprosy. Nice!

It is also fostered by a pressing need for understanding in general, and the right sort of compassion, which isn’t steeped in ignorance or pity-based, but works rather on the basis of equality through a respect for neurological difference.  What autism means can be different in each case – although there are common threads – and so I’ve found it’s helpful to engage in total blog immersion, and allow the myriad perspectives to filter through over time. It’s been almost four years since I began this process, spurred by the need to understand family.

So what have I learned?  Well, it’s been quite a revolution because I began at the wrong end of the stick. Through a systematic barrage of misinformation largely filtered through medical models of autism, I truly thought it was a baffling condition visited on the family through a combination of ‘bad’ genes and ‘bad’ luck. It shames me to say that I really did think my job was to help ‘afflicted’ family become as ‘normal’ as possible and ‘fit in’; a task I was mercifully unqualified for, being far from ‘normal’ myself. Menaced by the mantra of ‘early intervention’ and the language of ‘rescue’ versus ‘regression’ we agonised over, but happy failed to implement, a bewildering array of possible ‘cures’. The point is that autism was a negative in our lives and much grief spent over a losing battle to conform. I’m still so very angry about this hi-jacking of a relationship over many formative years in which autism felt like a chasm I could never bridge.

What I’ve learned from all these luminous (and freely given) blog gems, is that autism is so very human. Of course it is, it always was. Autism is not ‘other’, and autism is not what most people think it is. For me, autism is family, and my autistic friends have shown me that autism could perhaps be me. Wired differently too, I share many autistic traits but don’t struggle with social pragmatics. For me (forgive me if your view differs) the inability to process social pragmatics ultimately forms the outstanding feature of my loved one’s particular diagnosis. This specific learning disability (SpLD – current terminology in UK ) feels entirely parallel but rests in a different area of cognitive function from my own neurological disability, in which number, system and pattern don’t register. Both have sensory processing and co-ordination issues at core, and so I use my own neurological difference to create a force field of empathy and many compass points of comparison with my autistic family. It’s a privilege to be so close to autism, and to move between neurologies revelling in the beauty of difference. In sharing so much, my blogging friends have not only helped me understand my loved one, but also to understand myself; a fellow ‘square peg’ as one friend in particular puts it.

None of this detracts from the true challenges within autism and disability (using a social model) in the present. Also there are many co-existing conditions such as epilepsy, which create suffering for autistic people, but self-advocates point out that they don’t suffer from autism itself – this is an important point never taken up by the likes of Dr Casanova and A$. They seem to miss that a cultural definition of autism – albeit with a neurological basis – is being employed; autism here is identity and community. Autism is family. From this perspective, A$ and the rhetoric of ‘cure’ is entirely oppressive. Family is family and spectrum is spectrum. Dr Casanova’s fantasy of an elite intent on superiority is based on poor homework. Read the blogs Dr C.

What’s needed is a focus on the benefits of difference, and a true assimilation of the way in which assumptions about the superiority of neurological ‘normalcy’ (if it truly exists) limit us all. The good doctor holds disappointing views for a neurologist, which is too bad as he has the power to influence opinion.  It’s vital, in my view, to follow the lead of autistic self-advocates in insisting on detail and diversity within the autistic spectrum and avoid too much generalisation, which leads to sloppy assumptions and unfortunate stereotyping. Keeping to the particular safeguards against such unhelpful tendencies, and was one of the original reasons for beginning a blog post today, to share something I found significant, and to contribute; to give back. Because that, Dr Casanova, is what we do. And the following breakthrough moment, has nothing to do with cure, but everything to do with enabling, and empowerment. It’s also about ‘rescue’ in the form of paying to attention to detail and asking the right questions. No relationship to rescue in bio-medical terms.

For some time now my family member has wanted more social contact. But the question has been how to break into the bewildering social whirl outside the school gates? It requires complex pragmatics to navigate the volume and speed of NT communication and find out what the options for joining in might be. This is hefty processing. So imagine, in addition, the confusion arising from ‘hidden assumption’. In this case that everyone knows how NTs gather the relevant social information. You see Dr Casanova, autism can mean not knowing that NTs use questions to achieve connection. Autism can mean not knowing that NTs use them like phone book or a tv listing – just to find stuff out. And autism can mean you experience questions as something quite different. In this case as statements of intent.

I found out about this exact difference of perception only through a very recent social mishap. New Year’s Eve saw another occasion of failed expectation and social imprecision. I’ve spent such a very long time misunderstanding the refusal to use questions to make more effective social arrangements – not even by SMS. I thought processing issues might be at the heart of things every time the grind of mashed gears and a blank expression told me my words weren’t working. I knew to back off. Oh, I get it now, but only because I finally asked the right questions never imaging where they might lead us. That’s how hard it can be, Dr Casanova,  it can take years of mashed gears even with people who have love and patience in their hearts. But at last I know that asking a simple question feels as dangerous as peeling off your skin and showing everyone your acute need for companionship and belonging; how risky and exposing, especially if you don’t have a secure friendship with the other person to fall back on. It’s just what a young person needs when exposure anxiety is also in the picture. No wonder fear has always won out and caused such a roadblock.

At the moment of realisation all the years of thinking helpful hints just couldn’t be processed, flashed before me. I saw the tension leave my loved one’s body. How liberating it must be to begin to understand that simple questions don’t necessarily expose you to others. What fathomless depths to be managed every day when you don’t have a social compass. No-one should ever wonder why fear is so present in autism, nor diminish it. Spectrum is spectrum.

So we need to counter the ignorance of those like Dr Casanova who should know better and care more about detail. I’ve yet to read a blog claiming that autistics are superior to NTs (but I see the inverse implied every day and everywhere). Respect and equality will do. Thank you.

Sonia Boué is a visual artist based in the UK. Using discarded objects and materials, she fashions new narratives referencing domestic interiors and childhood games. Her work is research based weaving together history and autobiography. Barcelona in Bag is a current and ongoing project about exile following the Spanish Civil War. It is in development as an online museum.

“I am more interested in building a community of friends around a piece of work than numbers.”

Sonia has created and currently hosts The Museum for Object Research at http://www.a-n.co.uk

 

Sonia Boué, Arena y Mar (Sand and Sea), detail, mixed media on canvas, 2014.

Sonia Boué, Arena y Mar (Sand and Sea), detail, mixed media on canvas, 2014.

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A Response to Autism Speaks’ Propaganda Documentary “Sounding the Alarm”

August 12, 2014 5 Comments

Lei Wiley-Mydske and Leah Kelley recently blogged about their reactions to watching and live tweeting Autism Speaks’ documentary: “Sounding the Alarm”, which is now available Netflix. I didn’t think I wanted to torture myself by sitting through an hour of Autism Speaks’ alarmist propaganda, but I did. Lei and Leah both do an excellent job of describing their discomfort with the film and I completely agree with their thoughtful assessments. However, I did find myself fascinated by the propaganda itself. The one big take away from “Sounding the Alarm” is that Autism Speaks exists to serve the interest of Autism Speaks and the egos Bob and Suzanne Wright

The film’s propaganda narrative pivots on two major themes: The first is that Autism is a medical condition [a disease] and second, that it is a disease which is spreading at epidemic rates. From these basic premises the film lays out Autism Speaks’ standard appeal to fear: autism will rob parents of their children’s love, overwhelm families with medical expenses and that autistic adults have no futures because the lack of federal support and indifference. Who can possibly save us from this “epidemic”, this “tsunami’? Autism Speaks lead by the Wrights of course.

In order to articulate its narrative of fear, the film depends as much on what is not said is it does on what is actually said. For example the film uses the Center for Disease Control’s newest statistics concerning rates of diagnosis of autism in the U.S. in order to make its argument that autism is an “epidemic”. Autism Speaks’ co-founder Suzanne Wright insists that “There must be an environmental trigger” causing this increased rate of diagnoses. We then hear from three doctors at the U.C. Davis MIND Institute list several possible “causes” for the increased numbers; “pesticides”, “air pollution” flame retardants, the age of the parents. There is even a mention the discredited notion of vaccines “causing” autism. However we never once hear someone mention what the CDC itself and Autistic Advocates have pointed out, that this perceived raise is a result of better diagnosis and awareness among health professionals.

The films narrative of fear frames autism as a disease which can, with the help of Autism Speaks and much funding, be “cured”. Bob and Suzanne Write argue throughout the film that more public money must be spent to find “the causes and cure” of autism. The film completely ignores the idea that autism is best defined as a neurological and developmental variation. This idea is articulated by Nick Walker in his piece What is Autism?. As Walker points out, “Ultimately, to describe autism as a disorder represents a value judgment rather than a scientific fact”.

The biggest piece missing from “Sounding the Alarm” are autistic voices and the voices of their allies. Aside from a few seconds when we hear from a couple of young autistic men who work at a car wash, there is zero autistic input. Don’t be surprised that Autism Speaks will not include our voices; they can’t.

At the end of the film Suzanne Wright makes two statements; in one she is talking about Autism Speaks’ “Light it Up Blue” autism awareness campaign, Ms.Wright talks about getting groups  to participate from around the world and she says, “I need to do every country”: not “we need to” or “Autism Speaks needs to,” This is about her. In fact, it is autism which gives the Wright’s their celebrity. Autism defines them as public figures; it gives them purpose and influence. Ms. Wright also makes a statement about her grandson’s autism stating the “Christian is going to change the world.” Only this isn’t about Christian either, it is about co-opting his diagnosis to empower Grandma and Grandpa Wright. It’s very doubtful that Autism Speaks will ever listen to Christian’s autistic voice. Autistic voices are a threat to the Wrights, their cohorts and organization’s fraudulent message. Autistic voices expose the bare lies of the Wrights and as “Sounding the Alarm” proves, in order to maintain their power, they purposefully manipulate the truth, even if it devalues and silences those who they claim to serve.

I would recommend doing just about anything else with your Netflix time than watching this particular film, however if you are interested in learning about the joys and possibilities of autism, then I highly encourage you to watch Vectors of Autism: A Documentary About Laura Nagle which is free to view right now.

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Brent White is Autistic. He designs and directs adult programs for intellectually and developmentally disabled adults for the non-profit Ala Costa Centers in Berkeley, California.

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Adult Autism and Program Leadership: Yes, It’s a Big Deal.

June 5, 2014 9 Comments

Sur Mer 1 [Detail], mixed media, by Sonia Boue҆, 2014.

Sur Mer 1 [Detail], mixed media, by Sonia Boue҆, 2014.

The dust has begun to settle a little bit from a recent incident at an IEP meeting where a student’s family member attacked my ability to direct the ACAT transition program based on my autism. This is the original post and a fantastic response from Sonia Boué. My executive director, board of directors and the school district officials have treated this incident with the seriousness it deserves and I am going to trust the process for now as it moves toward a resolution.

A person involved recently told me that they had noticed how “comfortable” I seemed discussing my autism with the families of students, but they had not understood why it was a “big deal” until this incident. I appreciated these comments because they seem to hint at a recognition of the complexity of the very personal and delicate decision to disclose. But there is more to it than just that, and yes, it is a “big deal”.

I try hard to appear comfortable when I discuss my neurology openly with strangers. Appearing comfortable is practiced. Publicly disclosing either my autism or dyslexia always feels scary. It is not comfortable for me unless I am discussing it with other neurodiverse people. It is however extremely important for me to openly discuss it. It is a big deal that there are too few neurodiverse people in leadership positions in special education and there are far too many people who call themselves “experts” speaking about our neurology, which they clearly know little about. I’ve sat through too many IEP meetings listening to these “experts” get it insultingly wrong.

The day after the family member attacked me; I turned on the evening news and saw mass murderer, Elliot Rodger described first and foremost as having “Suffered from Asperger’s”. This of course is the prevailing view of intellectual and developmental disability in our society; burdensome, tragic, even dangerous. These views negatively affect each and every program participant we are meant to serve. Our ableist society fails to honestly understand neurological differences or to presume our competence. And it fails to acknowledge the existence of the negative neuro-normative constructs which permeate our special education system or how damaging and unsafe those constructs are. For me, being open about my neurology means speaking up to counter the overwhelming amount of misinformation which exists about our neurodiversity; even though that leaves me personally vulnerable.

I believe many special education professionals and caregivers have a firm intellectual and empathetic understanding of neurodiverse experiences. However my understanding is actual and visceral. My experience is lived, constant and valuable. The education and provider systems tend to focus on deficits and can overlook, or fail to even understand in the first place, the incredible ways in which neurodiverse individuals adapt to living in an often unfriendly neurotypical world. As much as anything, my role as an openly neurodiverse program director is to bear witness to astonishing ways our program participants adapt, grow and succeed;  and to bear witness as well to the struggles and pure originality to each individual life; this recognition is indeed a big deal at the deepest, living and breathing level of every neurodiverse individual.

Autism and my specific neurological wiring shapes and colors my life experiences. Growing up and living in a neuro-normative world has often been isolating and traumatic; my difference has been shamed. But it is just these kinds experiences which connect me to our program participants in a profound, intuitive and meaningful way. These experiences are the force which drives me to create programs which honor and respect the unique lives and voices of intellectually and developmentally disabled adults. And yes, this is for me, for us, a very big deal.

[Brent White is Autistic. He designs and directs adult programs for intellectually and developmentally disabled adults for the non-profit Ala Costa Centers in Berkeley, California].

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“I Heard a Rumor That You Have Asperger’s. Are You Even Capable of Running This Program?” An Encounter with Ableism.

May 23, 2014 26 Comments

I’m not naive. I understand the personal risk that comes from being open about my autism. I thought about it for a long time before I decided to make my diagnoses public. I understand that being openly autistic makes me vulnerable to ignorance and even cruelty.

I direct an Adult Transition Program called ACAT, which I designed, and an Adult Day Program called ACT. I have worked with transition age intellectually and developmentally disabled adults for over 10 years. I am all too familiar with negative attitudes society holds toward our population; our capabilities are undervalued; our voices are ignored and dismissed; our lives are viewed as burdensome and tragic. I choose to be open about my autism, to be an advocate, because I believe that it is absolutely essential for me to challenge these negative attitudes which are not only wrong, but harmful as well.

Apparently not everyone got the word. Yesterday at an IEP meeting, the sister of one of our students was ranting on about her displeasure with the program. She leaned across the table, raised her voice to me and spat out “I heard rumors that you have Asperger’s; are you even capable of running this program!?” I was outraged. Then she repeated, “I heard rumors that you have Asperger’s!” Anger rushed through me and my access to words locked up. I think I told her that it was none of her business and if she insisted along this line, the IEP meeting was over. My staff, Eric worked to diffuse and redirect the conversation. I was grateful for him. I know he was angry too. The rest of the table said nothing. Maybe they were stunned that a family member of an intellectually disabled young man would question my capability based on my disability. Maybe they were filled with shame. Maybe they were indifferent. I don’t know. I do know I felt unsafe.

As I walked home later that evening with thousands of thoughts and emotion racing around my head, something occurred to me; something important. It is easy and justifiable to focus anger on the ignorance of the family member and her nakedly cruel ableist words. Not only is her brother disabled, but she also works as a special education speech specialist. I have a profound sense of disgust for her. But I thought of the others at the table, all neurotypical and their collective silence.

Being open and public about your neurodiversity takes courage and certainly more courage then the others at the IEP table showed. I’m reminded how “experts” try to speak for us all the time, but when it come time for them to stand up for us, they fall silent. If my capabilities had been questioned because of my gender or my sexuality would there still be silence?

The best part of being an Autistic Advocate is presenting the positive side of neurodiversity, but there is another side to this as well, a scary side, which must be acknowledged. So as my hurt and anger slowly dissipate, I publicly wear my wounds. I don’t want people to speak for me, but I wonder, when this happens next time to any of us, who will stand up.

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[Brent White is Autistic. He designs and directs adult programs for intellectually and developmentally disabled adults for the non-profit Ala Costa Centers in Berkeley, California].

 

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