“Are You Even Capable of Running This Program?” : A Response by Sonia Boue.

Argeles Sur Mer 1939, Soue Boue

Argeles Sur Mer 1939, Soue Boue

 

Last week, the sister of one of our students verbally assaulted me at an IEP meeting by callously questioning my ability to direct our transition program because I’m autistic. I wrote about the incident here as a way to both conceptualize the incident for myself, and to use the incident to open up dialogues around ableism, neurodiversity and neurotypical privilege. I am grateful to everyone who took time to comment, but the most amazing response came from my friend Sonia Boue, which I am honored to share here:

From Sonia Boue:

Life is full of painful moments. None more so than when disability is mocked or cruelly disrespected. Ableism is a new word I begin to grapple with as I move closer to an understanding of my own neurological differences and listen to the rich and invaluable online community of autistic and neurodiverse advocates. So, within days of writing about the importance of language as a container for social bias, I find myself here again, in a space where words matter so much, speaking out.

In my artistic practice where I explore visual responses to the history of the Spanish Civil War, I constantly encounter the notion of witness. I am learning how very important it is to those who suffer injustice that we stand by and show our solidarity. I’ve come to understand quite deeply that silence is not good enough. Silence is complicity. Silence allows injustice to continue. Silence kills the spirit of the victim, which is not only unjust but ultimately dehumanises us all.

So when I read Brent’s powerful voice soaring with rightful yet contained and articulate anger in his blog I feel a sense of pride at his control, which is joined by my outrage and the knowledge that I must stand by. I cannot be silent. I was not at that IEP table when the offending words were spoken, but I am right there now. I imagine the scene and work out what I trust I would have been able to say. Shock of course is the first reaction, a violation has taken place. I trust I would have found the resources to move beyond this. I trust my voice would have remained steady. I trust I could have looked this person in the eye and told her of my immense respect for Brent and his extraordinary qualifications to work with intellectually disabled youth. Don’t you read the ACAT FaceBook posts, I would ask? Don’t you see how Brent finds positive attributes in your loved one at every single turn? I see his posts and I see the immense respect Brent has for his young charges. Why can’t you see it?

I guess what this person is doing is living in ignorance and we must hope with all our hearts that being as she is both a relative and professional she will arrive at some important realisations soon. Sadly, encounters such as these tell us what we most fear, that some neurotypicals will arrive at our table from a vantage point that is monocultural – I call this Animal Farm thinking, a distressing polarity exists in which NT is ‘good’ and autism is ‘bad’. If we unpick the particular abusive phrase in all it’s un-glory, “I heard a rumour that you have Asperger’s. Are you even capable of running this program?” we begin to arrive at the grisly truth. ‘Rumour’ suggests something clandestine and to be ashamed of when Brent is openly and proudly autistic. ‘Are you even capable’ gets at the heart of it all. This viewpoint cannot allow that disability can be multi-faceted when the truth is that we all have the jewel-like potential to shine where there is light. With ignorance, there is only darkness. A darkness that cannot allow for the notion of competence within disability.

With a heavy sigh I examine this situation and find that the only way to grasp what I’m looking for is to turn the whole thing upside down. The abusive words of two days ago came from a place of deep incompetence masquerading as it’s opposite. The viewpoint expressed is blinkered by an unacknowledged ‘privilege’ which comes from ‘belonging’ to the dominant neuro-normative culture. This perspective makes this person unqualified to see that it is because of Brent’s Asperger’s that he is supremely capable of designing and directing a program that truly touches and transforms the young people under his care. Those of us who are neurodiverse know that through our own struggles we gain experiences that can be worth gold. Nothing matches the perspective you get from having to work things out for yourself in an environment that is often unhelpful and even hostile to difference. This wisdom can and must be passed on.

This lady needs to leave her ‘Animal Farm’ thinking far behind her and get down to the vastly rich neurodiverse city to be found right here online. Within it’s sparkling lights so many brilliantly competent minds shine.

(The painting shown above relates to the struggle of Spanish refugees to survive in the hostile French internment camps after their flight from Spain. It is in our most painful experiences that the gold of wisdom lies. The painting is intended to symbolise strength, courage and determination.)

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

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.

media59

 

[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].

 

Too Shy: A Guest Post by Sonia Boue on Introversion and Neurotypical Assumptions.

rothoko

In the world of neurodiversity every word counts. That’s why I’m moved to write about a pesky little three letter word, used quite recently (and I must stress lovingly) to describe a choice to be quiet about my birthday. That word is shy.

This word was used by a very dear friend to describe my reluctance to advertise my birthday. There are people out there who would want to show their love for you, this friend suggested as she respectfully asked permission to tweet the news. Okay, I agreed and sat back to watch what turned out to be some lovely ripples of appreciation flowing from and her thoughtful gesture.

Though I had been a little taken aback when the 140 character word limit produced a shorthand version of my disposition regarding birthdays as being ‘too shy’, and I immediately tweeted that I wasn’t shy but simply preferred to be quiet, a state I find peaceful and relaxing. This seemed to have settled the matter, I wasn’t too shy and now everyone would know this because I had explained so. My friend and I were cool. Except that people began re-tweeting the too shy tweet (again lovingly and to speed the news) and suddenly that ‘too shy’version of me appeared to multiply and currently rests somewhere in cyberspace. Most likely it rests peacefully and actually, I am grateful for the confusion as it has given me its own gift, that of insight.

So the me who likes peace and quiet has been contemplating the necessity to unpick our everyday language, which contains so many unspoken neurotypical assumptions. This is an excellent example. For ‘shy’, particularly with the addition of ‘too’suggests awkwardness and even a problem. It suggests something that I should really be able to or want to do but can’t, due to too much shyness. It might suggest that announcing or wanting to announce your birthday is the ‘norm’. Also that if one is ‘shy’and doesn’t say about a birthday others can’t show their love for you. Now that last fact is true, but again it tells us something important about events like birthdays and the social codes that surround them. Some of this public birthday phenomena is about the desires of our loved ones to show their love. How interesting this is all of a sudden!

Well back to the kind of birthday I like and why, and why it’s important to differentiate if we want to make progress in peeling back some of these neurotypically dominant layers of assumption within the daily language that surrounds us. Like tissue paper wrapped around a fragile gift we need to remove each crumpled sheet to get to the prize within.

I’m by strong preference a quiet birthday girl – it’s something I really value. Making a choice to be quiet goes against the grain of cultural expectation. We are supposed to want everything to go with a bang and hold a party or mark the occasion in some obviously meaningful way. Over the years I’ve developed the confidence to celebrate quietly, without expectation in a zen-like way. I let the day come to me and treasure every peaceful moment. This is my choice. For me the intensely joyful and powerful work by Rothko shown above tells you everything you need to know about how invigorating this measured acceptance can feel. And all the greetings and gestures arrived at my door as wonderful surprises, unbidden and therefore all the more valued.

This quietness; a stillness around my birthday has become immensely important to me. I crave the absence of obligation and expectation. I seek them as my right. If it truly is my day then I choose to make things stop. How different this is to being too shy!

So what can we make of this in relation to neurodiversity and our rights to be valued and heard as merely different? Well, there’s another side to the story in which today my tweet about not being shy and preferring quiet is rebounding as a re-tweet and finding companions who also like this kind of birthday. These friends also tweet about their preference and I smile as I see a chain of association around quiet birthdays being made. This is fun.

This micro-tale of neurodiversity, birthdays and social media reveal several truths. Collective assumptions are embedded in the very language of the everyday and can trip us up when least expected. It’s surprising how narrow this perspective is when you consider the potential diversity of minds and their possible preferences. So we do well to question these troublesome words, for when we do we find that not only do we assert our own rights but we also enable others to speak. I’ve learned that in catching a distorted reflection in that hall of mirrors that social media can sometimes be we can call out our strengths, choices and self-determination. Now that is worth knowing and using every day too, isn’t it!

Intellectual Disability and a Path to Overcoming Stigma: My Conversation with Sam

We started the ACAT program in 2009 with six students. Sam is one of those original six. He was 18 years old then, but now 23, he participates our ACT Adult Program. He is very friendly and laughs easily. One of my great joys in program has been watching Sam’s confidence grow over the years.

Sam was ACAT’s first student to run his own IEP meeting and through that process, he and I had an opportunity to discuss what his disability meant to him. Intellectual and developmental disabilities are often framed within the construct of tragedy and burden, but the first time I asked Sam how he thought his disability effected him, he said, “I get nervous and I have trouble remembering things.” That was it, hardly tragic or burdensome; he needed support just as we all do. 

This year Sam became our first participant in the Youth Action Council on Transition (Youth ACT) which is a nationwide demonstration program designed to teach leadership and advocacy skills to disabled youth. 

This is our conversation

Brent: I know you have trouble remembering when you were placed in Special Eduction, but you believe it started in high school? 

Sam: Yes, it was at Berkeley High. I did not have Special Education until High school; not in middle school.

Brent: Why were placed in Special Education?

Sam: Because my learning was bad. It’s hard for me to say. I had trouble getting my homework done. Actually, my reading is good, but I usually had trouble taking notes or when a teacher explained something, I don’t get all of it, and when I get homework at the end, I struggle with it. In middle school I started having trouble with my homework.

Brent: Do you remember your first IEP?

Sam: Yeah, we had an IEP. I think that was my first IEP. I remember seeing a psychologist. He came to see me in class. I also remember they put me in speech; speaking was hard for me, I stuttered.

Brent: Did you understand that you were being diagnosed with a particular disability or offered services when the psychologist was talking to you?

Sam: No, the psychologist did not talk about my disability. I didn’t really know anything.

Brent: Do you remember how you felt during that time? 

Sam: Different; I felt it was a bad difference for me, because I did not know what was going on for me, and how I’ve been put into special education and they were talking about putting me in a transition program when I got out of high school. I mean, my IA teacher helped me plan all this, the psychologist, speech, case manager.

Brent: You ran your own IEP meetings as part of the ACAT Program, I remember that this was that the first time you saw the diagnosis of “Intellectual Disability”.  

Sam: Back then I never heard of that word, “Intellectual Disability”. I remember in my old IEP meetings the teachers used the say the word, I don’t want to say it. I can just say, “MR”. I didn’t appreciate it. I was really embarrassing to be called that word. it’s disrespectful. Back in high school, I was treated with disrespect because that word was used. 

Brent: You felt upset being defined as “MR”?

Sam: I felt I was really being treated the wrong way when that word is used. it’s like, whenever it was used, it felt like I was not independent, learning bad, struggling with homework. I felt like my life was uncomfortable.

Brent: I remember you saying once that you thought your parents were disappointed when you got diagnosed?

Sam: Yeah, they were like, why is your learning so bad? I think now they are over it. They are proud of my independence. 

Brent: I think they are proud of you too. We’ve talked in the past about you defining your disability in terms of how it feels to you and how you think it effects you Can you talk about this? 

Sam: What it feels like having my disability is that it feels different. How it affects me is that it gets in the way of me; i gets into my mind, and prevents me from going to college. That I couldn’t go to college just to take classes because it was so hard. What it feels like me having a disability is that I feel like I am somewhere that’s different than being on the right way. 

Brent: What struggle is hardest for you?

Sam: I would say classes is the most of what I struggling with. The other things I am getting the hang of, but classes are hard. That’s what the disability is like for me. It makes me nervous to go to school. I try to be independent in my classes, because of my disability it’s difficult to handle complicates things. That is my disability.

Brent: I know so far college has been frustrating for you and we are working on ways to help. I know you’ve accomplished a lot of good things. Can you tell me about some of those? 

Sam: What I’ve accomplished so far is managing my money and I can get around the community. This changed my life in a better way; I can get around. This is different from high school, where I could not travel by myself.

Brent: Learning to travel was a big deal for you?

Sam: I was really nervous at first, but my confidence was like, “I want to try to do this, and learn it.”

Brent: This sounds just like you! You get nervous and then you figure out how to try things and overcome those nervous feelings.

Sam: Yeah, now I learned how to do this and it does not make me nervous

Brent: Now with the YouthACT Leadership Program you’ve had a chance to do a lot of things you’ve never done before.

Sam: I’ve never been on a plane or to another state. I’ve done that now. I went to Washington DC as part of YouthACT. 

Brent: What did you learn by going to the YounthACT training in Washington DC?

Sam: I am learning how to be a leader and how to be an advocate for other youth with disabilities; to transition into adulthood and independence.

Brent: And you are currently working on a project about the Disability Rights leader, Ed Roberts?

Sam: Yep, mostly telling people about Ed Roberts and disability rights.

Brent: What else are you doing now that you’ve never done before?

Sam: I have a job. In high school they had a workability program, and my IA went there with me. 

Brent: Did you find it on your own? What is that like?

Sam: I found it on my own. Before, I never knew about having a job and making money. It makes me feel happy. I would say I feel some confidence for jobs, if I am able to do it, I just do it.

Brent: Do you feel like you have overcome some of the earlier difficulties?

Sam: I feel like I am really getting the hang of myself. I am not backing away just because I have a disability. I try to move myself toward new things, even if I never experienced it, I try it until I say, “Oh, I like it!”

Brent: Do you feel proud of yourself?

Sam: Yes, I feel proud of myself.

Brent: I feel proud of you too. Do you say it is possible to have an intellectual disability and be proud of yourself as a disabled person?

Sam: I would say yes. My life has been changing a lot. I am really confident, and my independence is really good. I am thinking of moving on.

Brent: Do you think it is possible for other disabled youth to accomplish what you have? 

Sam: Yes, if they are learning and getting there. For me, I have a disability. I don’t go all the way, I just take it slowly, step by step, until I reach far away. I am proud of myself for doing all the stuff that I’ve been through.

Brent: Is it ok for me to post this interview online for people to read?

Sam: I am comfortable wanting people to read about my life. When they read it, they’ll say, “Wow, he’s doing awesome!”

Summary

Sam’s discussion of being referred to as “MR” was uncomfortable for him to talk about. He is right, it is an offensive term and a horrible label to saddle someone with. I’ve never met a person diagnosed as mentally retarded who did not feel shamed by it and yet we only officially changed term it to intellectually disabled a few years ago. The process of transition to adult life is made even more difficult by shaming and stigmatizing within systems of services for ID/DD youth. 

I am proud of the wonderful things Sam is accomplishing. I know too that it has not been easy for him and that every move forward has come with a great deal anxiety. The depth of his accomplishments needs to be appreciated through this lens. And when we view them through the lens of the stigma as well, the real beauty of his accomplishments come into better focus. 

I hope that the support he has received in the ACAT and ACT programs has helped Sam by providing a space for him to take risks without fear of judgement or shaming. But the praise belongs to Sam. This has been his hard work, his journey and his success. I can’t think of a better person to take on the roll of youth leader and advocate. 

Sam in Washington DC

Sam in Washington DC

[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, Bullying and the Need for Safe Space: My Interview with Jonathan about his experiences in the special education system.

By Brent White

4/22/2014

Jonathan is a 19 year old participant in Ala Costa Centers’ Adult Community Training [ACT]. A few weeks ago he started talking to his group about some of the difficulties which arose for him after he was diagnosed with autism in the fourth grade; a time when he was taken out of a general education classroom and placed in a special education class. Jonathan remembers suddenly finding himself in a special education system where he encountered disempowerment, otherness and bullying. It is striking to me because of the Jonathan I have come to know who is sharp, good natured and warm. He is an emerging leader; a self-advocate with a growing interest in disability rights. I’ve seen his self-confidence grow in the short time he has participated in the ACT program, which seems in such a sharp contrast to what he describes in our interview. I have a keen interest in Jonathan’s experience because I am the director of his adult program and because I am myself autistic. 

[This is Jonathan’s story told with his permission and in his voice]: 

Brent: How old were you when you were diagnosed with autism?

Jonathan: Actually I think it was in 4th grade when I was diagnosed. In fifth grade I was moved into a different [special education] class.

Brent: Do you know why the school system asked for a diagnosis? 

Jonathan: My teachers noticed a problem with my speech, not turning in assignments, and I caused issues on the play yard.

Brent: Before you were diagnosed, did you feel like you were different from other kids your age at school?

Jonathan: Before I got diagnosed, I felt like I was exactly the same; a normal person trying to live my life and get through class, but also I remember a year or two later I developed a tick. I felt I was accepted; I had friends, and then things changed.

Brent: Did you get to sit down at a table and have a meeting with teachers before they placed you in special education classroom?

Jonathan: Yes at school, in front of my mom, in a closed off room.

Brent: What was said at your meeting?

Jonathan: “Jonathan you are a great guy; you try your best, but we are going to put you in a different class to try to make it comfortable for you and to place you with other people like you.”

Brent: What did you think about teachers telling you that they were going to place you in a different class?

Jonathan: I was young and I just said yes. That’s when things started happening and I didn’t have a choice. I got picked on and bullied. I was in the singled out group vs. the whole school. And it didn’t feel great.

Brent: Did bullying start immediately?

Jonathan: Yes, all different forms of it, but around one main point – “You’re disabled”; “You suck”; “You’re the R word”. All of it! One guy says “Hey fatso,” and eventually everyone follows. It leveled out in middle school and I remember I got picked on a lot less when I joined sports teams.

Brent: Were 6th or 7th grade easier for you?

Jonathan: 6th grade was okay, but 7th, I really struggled. In junior high I went to a private school for students with disabilities for the 6th-12th grades.

Brent: Why did you go into a private school?

Jonathan: They said that it was better for me and I would excel and I would do better with people with similar needs as me. 

Brent: Why was the 7th grade so bad?

Jonathan: 7th grade was a nightmare. The teacher was completely new and didn’t know what they were doing.

Brent: Did the bullying increase? 

Jonathan: Well my behavior increased, because I was not myself. I was seeking negative attention and getting myself into trouble.  It felt like a prison, everyone that got in wanted out. We all purposefully tried to get in trouble and run out.

Brent: Did you talk to your parents about this and say “hey I’m miserable and this is like a prison”?

Jonathan: I told them and they said it’s just a few more years and you’ll be done.

Brent: You stayed until you were how old?

Jonathan: I think 15.

Brent: Then from 15 you went to….?

Jonathan: 10th-12th grades I went to one school. The academics were much harder and there was a basketball team and football team.

Brent: Did you join the basketball and football teams?

Jonathan: Yes, and that’s where I bumped into someone I knew from the other school.

Brent: So you made a friend!?

Jonathan: Yes, he had the same diagnosis as me and we were best buds.

Brent: Did you have friends or best friends before 4th grade?

Jonathan: Well that’s where it gets really tricky. I don’t remember having good friends before 3rd grade. I definitely remember the enemies.

Brent: So you had no friends between the 4th through the 10th grades?

Jonathan: Yeah.

Brent: One more question; it’s abstract

Jonathan: About art?

Brent: No about you. So if you, the Jonathan today could go back in time and talk to the Jonathan in the 4th grade who is about to go into the special education system, what would you say? What advice would you give?

Jonathan: It’s actually pretty hard. I could start off by saying to myself, “Stay away from bullies and work harder than you’ve worked before; hang low and try to stay under the radar.” I could say; “Try not to attract attention to myself.” It always finds you again, just like that new kid feeling. The question is really hard and I don’t know how to answer. 

Brent: How would you make your 4th grade-self feel better?

Jonathan: Maybe standing up for myself and say. “You know what? I’m not having this.” And I wouldn’t care about being a teacher’s pet if it got me away from bullies. Maybe standing up to parents and letting them know that I’m really not comfortable here and I want to get out of here.

Brent: How is Jonathan today, the Jonathan who is out of high school? You’ve moved and started a new life here in the East Bay.

Jonathan: That Jonathan is going through a lot of transitions.  I do say that is part of me. Besides transition, I’m learning how to be independent and I’m learning skills like cooking. Before the ACT program, I didn’t know anything about cooking. But now I’m much more open and I feel like with this problem, I’m challenging myself more to do better and think better. And make smarter decisions that could have pros and cons either way.

Brent: Your experience was traumatizing. But do you feel like you’re optimistic now?

Jonathan: I’m confident. I’ve learned more skills that will allow me to deal with bullying compared to my 4th grade self. I can’t say I’ll never be bullied or picked on.

Brent: Sounds like something we should work on together.

Jonathan: Right now I’m happy. The worst part of it all was being singled out and not having a choice and they kept telling me that I had a disability and learning issues, but for all that they never gave me any history about that .

Brent: I’m so sorry you ever had to go through that. Do you feel positive about being autistic now?

Jonathan: I’m comfortable with it. I’m learning to handle it better and like I said, making better choices and learning new things. I’m actually kind of happy I’m autistic because it helps me see the world differently and also understand my past, because there is a lot to learn about myself. Autism is part of me and I’m not going to let anything stop me from living my life. 

Brent: That is a really beautiful thing to say Jonathan. Thank you so much for sharing your story and putting up with all of me questions.

Jonathan’s story is compelling and it points out the struggles many young people have within a special education system which can be stigmatizing, disempowering and even unsafe. I find Jonathan’s resilience remarkable. I think it would be easy for him to blame his troubles on autism and for it to become a negative focus in his life. This as much as anything speaks volumes about the strength of Jonathan’s character and his ability to overcome and to move forward.

Jonathan’s story illustrates another important issue; the need for safe spaces. Creating safe spaces should be the foundation that any program which serves the needs of developmentally/intellectually disabled folks is built on. Safe space means physical and emotional safety.  It is a non-judgmental space where differences are celebrated and never shamed; a place to truly be yourself. It allows room to take risks, fail, and learn from those experiences; a place where it is ok to make mistakes; a place where everyone is heard and respected. Jonathan’s story is an example of why this is essential. 

I’m happy that Jonathan chose the ACT program and that I’ve had a chance to meet this terrific young man. From the ground up both the ACAT and ACT programs have been designed as safe spaces. Hopefully this is a place where Jonathan can find support, encouragement and the respect he deserves. 

Jonathan at the Ed Roberts Campus

Jonathan at the Ed Roberts Campus

Jonathan patiently allowing me to take his picture.

Jonathan patiently allowing me to take his picture.

[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].

Autism, Work and the Advantage of Being Wired Differently

This post is the result of several conversations I’ve had of late about autism, employment, and the difficulties many neuro-atypical folks have negotiating the world. I know for me, with my own neurological mixture of autism, dyslexia, and PTSD, the world is often very perplexing place, but my neurology has some amazing advantages as well; sometimes it is a matter of finding a way to express it. This is about the time I discovered a unique skill; book scouting.

When I was in my mid 30’s, I worked at a used bookstore called Leon’s. Leon’s was an institution for many years in downtown San Luis Obispo, CA. It was a huge place lined with shelves stuffed full of books. People would come in all day long to sell or trade their books. The exchange for me was magical because I never knew what kind of treasure might be hidden in those paper bags and cardboard boxes of books. Some of these folks were known as book scouts. Book scouts made a living or tried to make a living by finding used books cheap and selling them to the bookstore for a profit.

I quickly became fascinated with the idea of book scouting. It was treasure hunting and I liked the idea of treasure hunting. Once I started book scouting, I became instantly fixated. I scouted anywhere I could find books cheap enough to make a profit; garage sales, thrift stores, rummage sales, library book sales. Scouting worked for me on several levels. First it was a solitary endeavor. I traveled hours by car to look for books, affording me these beautiful stretches of solitude. Second was my brain’s ability to effectively compartmentalize and select specific books out of a field of many. Imagine trying to scan 1000s of books rapidly and all at once to find maybe one book of value. That is what scouting often was. My brain could skip common books or books with brightly colored dust jackets because those were usually popular novels and of little value. My brain saw color tones [hues of yellows, gold] or specific fonts or graphic design that would delineate a specific period of time. There was size and weight. I never read the whole spine for example. It would take me too long and more than likely confuse me. I only saw parts of words or the shape of lettering. My brain processed this kind of information quickly and I operated on gut instinct.

Scouting books occupied all of my thoughts. I studied everything; publisher and bookseller histories, price guides [these were pre-internet days], guides to identifying first editions, and rare book dealer catalogues by the ton. But most importantly for me, I spent hours just looking at valuable books either in bookstores or photographs. I studied and internalized their lines and colors, bindings, the lettering on spines, the whole of their architecture, which became a code in my mind and a special language associated with the object of books. This language was expressed somatically, like different frequencies of butterflies in me stomach, or the hair on my arm standing up, and increased heart rate. Everything else that might be going on externally around me was shut out when I scouted. It was a glorious state of perception to be in; successful, empowering and safe.

Book scouting worked because of the same neurological wiring which made the world so vexing for me. It was the up-side. This specialized skill was a part of the whole of me. It was the first thing I was ever good at. It was the first time that I was ever able to access an ability that was unique to me and that folks with typically developed neurology could not do as well or with the same depth and consistent outcomes. I scouted for 15 years, bought literally thousands of books and some quiet rare.

My brain’s ability to organize, connect and codify information in unique ways made me a great book scout. The success I had finding books helped me appreciate and trust the way my brain works. This is so important, because it came to me after a lifetime of being shamed and told that the way I think or perceive was wrong. I see connections where others often don’t and I’ve learned that it is best to not follow along the same paths as everyone else. For the past five years my particular neurology has helped me design a cutting edge transition and an adult day program from top to bottom with the sincere hope of creating a space where other neuro-diverse folks can find their unique advantages, their skills and passions.

Lovely Secondhand Books!

 

[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].

“He is sitting in a Chair” A Description of Friendship – Expressions of PosAutivity: #AutismPositivity2014

I observed an interesting encounter yesterday between ACAT/ACT teachers and our participant Rafael. Rafael and his group were working with a relationship curriculum and discussing friendships. The teachers ask Rafael who his friends were. He thought about it for a while and said that Ihe was his friend. Rafael and Ihe have been forming a lovely bond over the last few months. The teachers next ask Rafael why Ihe was his friend. This question took longer to answer, but after careful thought, Rafael said, “He is sitting in a chair.” It is easy to take Rafael’s answer literally; Ihe was sitting next to him at the time, but I understood the intention differently. Their friendship is expressed by proximity, but not by words. They choose to sit together all the time on BART, at lunch or when working in groups as they were yesterday.

It got me thinking about how important it is for me when someone chooses to sit next to me in social situations. Like many autistic folks, social pragmatics are an issue for me. It isn’t that I don’t want to be friendly or meet new people, nor is it simply an issue with shyness or awkwardness. The issue for me is walking up to someone [stranger or not] and striking up a conversation makes no sense. I have no access to how it works. I know intellectually how conversation, particularly small talk should work, but I cannot conceptualize the process in in my mind. It is blank. Add to this, difficulties with understanding spoken language or understanding the flow and mechanics of conversation in general. Social situations, especially as gateways to forming friendships are most often frustrating and stressful.

This is life-long for me, from my childhood until now at age 55; it has never changed. While I’ve learned adaptations along the way, the nuts and bolts of social interactions have remained just out of my reach, a confounding mystery. It can be lonely and isolating watching social interaction happening all around me and feeling shut out, not because I’m not invited, but because I can’t internally access it, at least not on my own. This is why someone choosing to sit next to me and attempting to strike up a conversation is so important. It doesn’t always work, but it works sometimes. Someone taking the time and looking past my conversational awkwardness can be a blessing. While I don’t have many friends, my friendships have often started when someone chose to sit next to me.

When Rafael said of Ihe’s friendship, “He is sitting in a chair”, I heard something beautiful and profound. I heard that Ihe is kind and sweet and takes the time to sit with Rafael. I heard that Ihe is willing to bridge whatever conversational gap might exist, and importantly, that friendships can exist on a non-verbal level and succeed. In fact their connection runs both ways, as Rafael also chooses to sit with Ihe as well. The friendship between Ihe and Rafael is forged through the presence of the other and language is not necessary. “He is sitting in a chair” as a description of why someone is a friend, is a deep and endearing answer. For me, it is one of the most interesting and understandable I have ever heard.

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Rafael and Ihe riding the BART train together.

[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].

Asperger’s, Object Art and a Case of Extreme Empathy: Adventures in Visual Thinking

Asperger’s, Object Art and a Case of Extreme Empathy:

Adventures in Visual Thinking

by Sonia Boué & Brent White

 slc

 “We’ve shared a language that seems to hit the retina first and is beyond words. There is a definite emotional connection and a growing friendship.

During February 2014 I (Sonia) undertook a creative online project called La Retirada, in which I made daily posts on Facebook and Twitter detailing my researches into the Republican flight from Spain at the close of the Spanish Civil War. I am a visual artist and this was a personal story about my grandparents and my father who numbered among the half a million Spaniards who fled Spain during the mass exodus of February 1939.  I told my story through photographs and objects, I posted my feelings, observations, original poetry and all manner of documentary material. As I inched my way towards the creation of a piece of object art to mark my journey, I gained a group of followers. As the days passed I began to see that I had made a particular and unexpectedly powerful connection with one of my followers.

Brent White, viewed my work daily and as the project gathered momentum he posted comments of unusual perceptiveness and emotional intensity. It became clear that here was a visual responder and a person of extreme emotional sensitivity. I confess I was surprised. Brent is creator and director of Ala Costa Centers Adult Transition Program (ACAT) in Berkeley CA. He identifies as autistic, dyslexic and PSTD.

It was such a rich experience having Brent alongside the project that I knew I had to share the two most important discoveries not to say gifts that Brent’s contributions had given me. The first was how very powerful object work can be even when the objects belong to someone else. The second was how extraordinarily and delightfully empathic an autistic person can be.

The significance of social media as a facilitator throughout this process is also noteworthy. The immediacy and intimacy of the comment facility on FaceBook is moderated by the distance and control bestowed by the virtual world it occupies. This enabled conversation and response to take place that was personal but felt safe.

The following is our conversation recorded in the days that followed the final piece about our experience in which we try to make sense of what happened between us.  It’s important to note that I am also wired differently (dyscalculia and a sensory processing condition) but do not have a diagnosis of autism.

Sonia: Brent, your response to and contributions to the Retirada project were exceptional. I came to feel I was conversing with someone with an unusual visual gift and sensitivity. I’ve been delighted to observe that the project has come to mean a great deal to you and I would like to explore this.

You connected to the images, to the story, and to the characters. Through this process we’ve quickly arrived at a feeling of mutual understanding. It feels like we share a language in which words are secondary, and in which empathy and intuitive knowledge lead.

How odd! This isn’t supposed to happen, right? Asperger’s is supposed to prevent you from relating, empathising and communicating with others. Yet here we are, within the space of one calendar month, collaborating on a piece of writing which will attempt to describe how we’ve experienced this meeting of minds through an art project.

So, I would like to ask how you felt when you first saw the project? Did you sense immediately that it was something you could relate to or was it a slow build up?

Brent: I struggle to answer this because we communicated in a space with very few actual words, but a great understanding of what the other was saying. So much of how I experienced Barcelona in a Bag is far out of the reach of ordinary language. I do not have a strong enough access to descriptive language to ever adequately say how I felt or what the psychic trips down the rabbit hole where like when I viewed a photograph of a purse inside of suitcase. Your choice of objects, the way they were posed, stacked or grouped together sparked my imagination and opened up vast spaces of understanding.

I loved how the story unfolded each day without really having a clue of what was coming next [I was a little afraid that I might say something to change it in some way!]. Each day you would add more and more weight. The story was universally human, so perfectly told. It was about your family, but it was about our families, all of us. It was magical and sad and rich.

It took me a little while to understand what was going on with Barcelona in a Bag, which seems strange to me now since I felt so swept up in it. I was confused at first about what the project was meant to be.  It wasn’t until the objects started to appear that I found my attention taken. On February 6th the suitcase with the initials S.L.C first showed up. I knew then that Barcelona in a bag was not ordinary.

The question about relating is difficult. The short answer is yes. I have a fascination with old suitcases. I find them magical, but here this is a problem, because I need to say why and what magical is and all I can really do is think of how excited [jumping up and down excited] I was when the suitcase opened up and the purse was inside…

I need to reflect on the whys of this, so I need to stop and walk and think, but let me ask you; why is it magical?

Sonia: Okay, why is the suitcase magical – I take it you mean Socorro’s suitcase?

I was at the flea market towards the end of the first week, that period when I was living with the sensation of sand in my teeth and waking in the night feeling Abuela’s haunting presence. Having scoured the Robert Capa photographs I knew I was looking for blankets. I got so lucky right off I couldn’t believe it. A woman had two blankets on her stall, one of which was perfect and dates from 1941. I suddenly felt the project had it’s own wheels and would carry me along.

It was then I saw the suitcase. It had something special and when I saw the letters I knew it had to become part of the project. The letters enabled me to weave in the character of Socorro Lorca – the story of NOT being Lorca is hugely significant and will be explored over much more time. So I really needed that suitcase.

So perhaps the suitcase is magical because it belongs to Socorro? Socorro brings hope and humanity to a dark, dark place.

A suitcase also manages to suggest so many possibilities – but for me it is about travelling to Abuela – all those journeys I made to her as a child were so wonderful. The suitcase is in the end about Abuela – endlessly resourceful determined and loving.

I was interested in your comment on one day that your head was spinning with the objects. Can you say more about this? I remember for example you said I had made the people in the story and their night in the forest real to you.

Brent: This is my riff….The suitcase opens up a space, a rift into your imagination. Soccoro walks through and takes form. She is made real, made flesh because of the solid weight of the suitcase. I believe in her because of the suitcase. You walk through the portal and knit her together from memories of Abuela, of things in your life. None of it real to me, but reality of it cannot be questioned.

Are objects portals? Also, I cannot yet answer why the purse inside of the suitcase grabs my attention. So much of what we are talking about feels like those fleeting moments when you wake from a dream and try desperately to remember or to hang on because it made you feel. You might not even know how it made you feel, only that you felt deeply. So much of what we are talking about here for me is this.

The objects are a portal and Sonia is making dreams. Sonia speaks in dream language.

Sonia: It’s to do with visual thinking I think. It’s something to do with the concreteness of the object perhaps?

Verbal language is abstract, it’s not a direct experience we can’t touch it or see it though it might conjure pictures in our minds.

This is why objects are so important and powerful to us – in a very real way they are our language and we read them at a level that occurs before verbal language comes in to name it, add some further more ‘complex’ meaning, or attempt to explain it. This is why language sometimes feel so limiting and reductive I think. It can’t capture the immersive dream like experience that significant objects can evoke in us. Just now I am wondering about parallels with music.

So your idea of objects as a portal is wonderful – seeing concrete objects makes a direct connection to a part of our brain that has preverbal knowledge, for visual thinkers this is a strength area. Visual understanding seems to be linked to our emotions perhaps because this is how we connect to the world.

About those suitcases. The blue suitcase I can now trace back to 1968. That year we were living in Mexico because my father had a sabbatical there. I have a picture of him coming off the plane from Mexico at Madrid airport. The suitcase at that very moment would be either in the hold or being taken out of the hold to be put on the conveyor belt. That’s the scarred suitcase by the way.

I wonder if the suitcases are so potent also because they have an outer shell and an inner space, which we can’t see. They are a little bit like people in that way. We can’t read what’s inside, we have to guess.

Brent: Magical is sticking with me as an important part of our conversation….

seeing concrete objects makes a direct connection to a part of our brain that has pre-verbal knowledge, this is our strength area in which we know stuff before we can give it words

I think this is exactly right. This is causing me to bounce around a little bit. When I started the ACAT program, I had ideas about what I wanted it to look like, but I wasn’t able to articulate it for months. This is how my original idea looked my mind.

act

If you see it out of the periphery of your left eye, that comes close to my pre-verbal concept. It took me three years to put it all into words. [the spiel as I call it]. I believe the lines are boundaries and the red circle [which was more of a red blob] was sort of the meat. I knew when the program was finally going in the direction I wanted because those lines became the front of a large ship in my mind, forceful and solid.

I keep mentioning dream language because dream language is pure emotional expression that generates metaphoric images. I realize of course autistic minds are not supposed to grasp this.

I have a strong attraction to suitcases, vintage, but not too old. I had a memory this morning while I was showering of the interior of a suitcase from my childhood. Mostly the silk pockets along the sides used for holding items.

I agree about the inner space of the suitcase, a closed suitcase is mysterious, who knows what can happen. I also have a feeling that they as objects are important because they mark fixed moments in time. They are artifacts. In a sense that make the human experience ephemeral. Objects hold the moment in time. People pass on, they change, they forget. Objects remain. Maybe that is why finding your father’s suitcase is so emotionally powerful. It holds his essence, his dust frozen in the moment, 1968. I like your idea of ‘Skin” and the tear, the wound becomes powerful.

Opening the suitcase and finding the purse I think connected the story right back to Abuela. The purse to me was hers. Her object, her essence. The purse was a magical object in my mind. Magic is possibility. The suitcase carried the possibility for a world beyond the obvious world. That is what my dream life is, magical possibility.

This is important because I perceive this waking/dreaming duality all the time. It is my constant reality. My brain makes connections, it is my strength. I see all things connected [although it is much harder for me to connect people to the larger breathing world constantly spinning, shaking, bouncing, vibrating all around us].

Spinning refers to opening my imagination. The objects in the piece would crack my imagination wide open at times, I would have access to memories and dreams, history I’d read about. It feels like traveling inward through a wormhole into the deeper universe of my mind. The secret language, the dream language. I would see and feel history clearly. The real and the imagined existed side by side in a way that didn’t matter. As it should be. AND I could talk to you about it in an open way. I didn’t need to hide the dream side. I didn’t fear that you would think that I was mad.

There were times toward the end of the project where the weight of the reality of your family would hit me solid. The revelation and reality of your grandparents hiding in the forest from the Nazis was stunning. And it was real because I realized that had they not done that, you would not have existed. I would have never viewed the suitcases. The kind of connection we were making would have never happened. I was grateful and scared. Your grandparents reached through time. The Abuela in my mind had shape and I honestly felt so impressed by the size and ability of her spirit to work such magic both in life and beyond.

Sonia: You’ve led me to the very beginning of Barcelona in a Bag.

It was Abuela’s handbag that knocked me into yesterday and I was back with her in her time and in her place: her flat in Barcelona. I felt her spirit so powerfully.

I found this odd to begin with but I’ve got used to the feeling Abuela is with me, that she helps drives the project and encourages me to be bold and share the story.

So you see your intuition about the purse and the suitcase is absolutely right. You’re not supposed to be able to do this kind of thing – and yet you do it beautifully because I’m using your language, you get it, you understand. I didn’t have to tell you, you just knew.

Brent: I don’t buy into the idea that autistic folks lack imagination. I do believe however it might not show up in ways that fit neatly into neuro-normative constructs of what imagination should look like. I feel the same about the notion of empathy.

I’m going to attempt to unpack your questions [Oh, I just realized the connection between unpacking suitcases and unpacking questions]. Dreaming: My childhood was filled with nightmares and there were times as a child that I couldn’t tell if I was dreaming or awake, a feeling that was much more terrifying than the dreams. Nightmares and dreaming became just as important to me as what went on in the waking world. As I got older and the nightmares continued, I taught myself to dream lucidly. It was maybe the first place I learned to feel safe [or at least in control]. My mind exists in the dual universes.

I keep my imagination under wraps for the most part, because most people don’t know what I’m talking about, however I think artists are different. It might seem a bit odd and it has always been hard enough for me to fit into the world that adding layers of oddity to it would be even more isolating.

I haven’t really thought about the difference between neuro-typical and neuro-atypical folks and their imaginative processes. I don’t know. I don’t think the inner worlds, or secret language can be revealed. I think that it is beyond words. It is rich because it is beyond words. It exists in emotion and symbols which are too personal for ordinary language. Language is the limit. Language is maybe why neuro-typical folks don’t think we have imaginations or empathy. You can watch one of my films and at least feel close to how I feel, but if you look at it simply as a common narrative or need words around it, I would imagine that the films are a nonsense. The same is true of Barcelona in a Bag. How does a suitcase or a purse or a vase tell a story? How can you ever attach any emotional meaning to those objects? Yet the story is so vast, so human, so true.

Sonia: Is it exhausting to live with a duality of such powerful imaginary experience alongside ‘real world’? Does it get in your way?

Brent: No, it is just the opposite. It gives me access to the world. Sky-Bird-Tree-Dirt everything is connected and has meaning. Sometimes my mind draws these amazing lines, like graphs across the sky. I love the atoms of the world. They are like me. Like I said before, it is people I can’t connect. I know they connect because I am one of them, but they often feel separate. People, their constant chatter, their invading my personal space, their affects, their inability to see Sky-Bird-Tree-Dirt gets in my way. People scare me. Of course I’m making a generalized statement here, but it is my interactions with most people that makes everything difficult.

Sonia: You say that within an art context you feel comfortable talking about the secret language and that if you mentioned it in other contexts it would compound your otherness. I’m going to think about this a little before I respond fully. I get it, but I want to explore the notion that it’s not okay to share our inner processes with others, where the boundaries lie and how that changes from context to context. I think that this could be where it’s so difficult for Autistic Spectrum Conditions (ASC) because of difficulty with reading the subtle nuances of context. I want to encourage you to believe that it can be shared in a secure context, which may be more diverse than you first think (if that makes sense). I would love your film making to become something you can share more widely at some time. You are extremely talented. I want you to know this.

Brent: There is a way when I view art like Barcelona in a Bag, that I want to have my own experience with the piece first. That experience might be different from what the artist intended, but I don’t look at something and think, “I wonder what the artist is trying to tell me?” As a viewer I’m not sure that is the most important question. What is interesting about Barcelona is that I would have very visceral reactions and I would make connections [for example, my grandparents+dustbowl+migration+migrant camps from my personal history] but I was always keenly aware of your narrative. Your narrative was primary and whatever personal parallel experiences I had were secondary. Does that make sense? I might see a Kandinsky painting and go spinning off of a particular shade of green and not really care very much what Kandinsky meant by that shade of green [my apologies, Wassily].

This is where our conversation tailed off and quite naturally morphed into friendly exchanges about what was happening in real time for each of us. We shared our tricks for coaxing sleep during restless nights, our morning routines and most importantly our grief at the passing of young lives. The experience we shared through La Retirada appears to have forged a connection, a sense of recognition and excitement about finding each other, which continues and extends to the physical world. This week I sent Brent a small booklet based on the project and in a few days time it will land in his office in Berkeley – an object about the objects which brought us together. In a very real sense we have become friends.

Our conversation has been edited but is presented without analysis. I feel this is important for the following reason. Brent particularly (and I do so agree) would like to make clear that this experience and his responses are unique to him and that he doesn’t speak for autistic people generally. So we’re not sharing our process to advocate the use of objects to connect with ‘autistic’ people. Heaven forbid such a proscriptive and soulless notion.

No.This encounter has been about the power of objects to reach some of us. Further it is about the importance of understanding that the stereotypes (and even diagnostic criteria) about the emotional lives, imaginative reach and empathic capabilities of autistic people are seriously flawed because they are neurologically biased. As Brent explains, it is essentially a problem of translation – imagination, emotionality and empathy are experienced and expressed differently and may even be of a different hue entirely. The question becomes how to arrive at a meeting point. I call this cultural translation.

So finally, this piece is a provocation to think about the many possible pathways through to making connections with those who are wired differently, based on finding shared experiences, a sense of equivalence or recognition and most importantly on a relationship. For this to happen there needs to be a cultural shift in understanding that there are many languages available to us rather than remain so reliant and insistent on the ability to verbalise and converse in real time. Put that way a neuro-typically dominant/ biased society begins to sound unaccountably boring.  We’re all the richer for our neuro-diversities, without question.

Autism and Box Scores

I did an interview with M. Kelter a month or two ago for the Thinking Person’s Guide to Autism website. M. asked me when I first realized that I was autistic and I mentioned to him that it was seeing myself reflected in one of my first students, Jason H. I wanted to go into this in a little more detail.

It was sort of a circuitous road that lead me to a job working as a support staff for the Oakland Unified School District adult transition program. I had been a rare book dealer just a few years before, but chance, or luck, or circumstance had brought me to the student cafeteria at the College of Alameda in my early forties and sitting at a table one morning with Jason H. Oakland Unified hired me because A.) I was breathing and B.) Because I had the college credit to qualify as a paraprofessional under No Child Left Behind Act. I seriously had no idea what I was doing. There was no formal [or informal] training for the job. I just showed up.

I mentioned in the interview with M. Kelter that I didn’t have a clear concept at the time of what Autism was beyond what I had seen in fear filled news stories of lost and silent children who were incapable of love and beyond hope. I sat silently with Jason for the first three weeks of our time together assuming that he was non-verbal. I would ask him questions and he would shake his head yes or no. This one morning we were sitting silently as usual, when a client from another program walked over and said, “Hi Jason! are you still reading the baseball scores to everyone?” Jason turned the client and said, “No. I don’t have a newspaper.” I excitedly asked Jason if he wanted to go get a newspaper and read me the baseball box scores. This became our ritual for the next few years [baseball and other sports].

There is more to this story than just Jason and I bonding. I knew instinctively why Jason needed to read the baseball box scores. It was a ritual for me as well and had been since I was 9 years old I first discovered box scores with their beautiful rows of numbers and symbols, so ordered and predictable, so comforting.  As a child in school, I would watch other boys and try to decode how they knew how to act and interact with one another. It was such a conundrum for me, because they clearly knew something that I did not. The boys all talked about cars and sports and I figured that I needed to find interest in those things as well. I came up with the idea of buying baseball cards.

At first glance the baseball cards were hardly more than pictures of men I mostly have never heard of, but the back of these cards had these amazing rows and columns of numbers which I became infatuated with instantly. The numbers spoke to me in ways beyond the simple understanding of player performance. They took on personal meaning and the statistics on the back of baseball cards, as wells as score sheets and baseball box scores soon became part of an internal lexicon for me. It is not a language I can really describe very well here, but they gave me a framework or a template to internally weigh and balance my experience [a way of knowing what is solid and what is not solid].

The beauty of box scores is that the structure never really changes. Each baseball season the daily box scores accumulate the totals which will eventually end up on the back of a baseball card. When those statistics balance in in certain ways, it is very satisfying. The box scores calm me.

Jason lit up over the idea of us getting a newspaper. We nipped over to a corner market, bought a paper and brought it back to the student cafeteria.  So here was Jason with his newspaper opened to the baseball box scores. I watched his eyes scanning the columns and rows while his index finger run up and down on the newsprint mimicking the movement of his eyes. Finally he started talking, almost screaming with excitement about the scores and I knew that I was like him. This ritual of ours was so specific and this was my epiphany, “Jason is like me. I wonder if I am autistic too?”

Jason H. scanning the baseball box scores.

Jason H. scanning the baseball box scores.

[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].

Learning Disabilities, Shame and What Really Matters.

I have never been officially diagnosed with a learning disability, however I have had lifelong struggled with issues in a number of academic areas.

I’ll start with spelling. I’m lucky if I spell 50% of the words correctly when I write anything. The arrangement of letters or the grammatical rules of English make little sense in my head.  I can read fine, but if I try and read aloud I get easily confused and lost. I also insert words into the text, which I might do was well when I read to myself. I have trouble with pronunciation. I say words incorrectly all the time. If I I don’t correctly pronunciation of a word in the first time, I will continue to mispronounce that word forever.

Math is another area of difficulty and beyond simple addition and subtraction I cannot perform math functions without a calculator. For example, I can’t remember my multiplication tables past 5. My mind can’t line numbers up and has a hard time visualizing them. I managed to make it through college, but forgot the rules of mathematics as soon a learned them.

I also have a poor memory for most things. I have no real sense of time passing from year to year. Things that happened to me 25 or 30 years ago seem like they just happened a few months ago. Ask me how long I’ve lived in my apartment or how long I’ve had my cat. I have no idea. I have to look it up. I forget names and faces all the time. I also get months and times mixed up quite often.

I’m writing about this for two reasons. The first is shame. I have felt shame and have been shamed by others throughout my life because I can’t spell, do math, or remember things. My school report cards were filled with “not working up to his potential.” I have been laughed at, ridiculed and humiliated by my parents, teachers, peers and friends because of my inability to perform basic academic skills in ways that seem to come so easily to others. The implication of course has always been that I’m less intelligent or less of a person because I can’t do those things.

I have lived my whole life with this terrible sense of shame and frustration; always needing to explain myself or prove myself. And I recognize the same sense and shame and frustration from the participants of our adult transition and adult day programs. We are these unfortunate products of a system that defines our capability based on basic academic skills. It is really hard not to see yourself as a failure when measured against [arbitrary] academic standards and it is equally hard to muster up the energy to participate in activities such as reading or writing when you constantly fail at them.

Which brings me to the the second and more important point: The ability to read or write, spell, do math or remember stuff is an extremely limited way to measure an individual’s capability. I have sat through too many IEPs listening to parents fretting about their child’s inability to read or write and worrying about what the future could possible hold for them, while entirely missing all the amazing ways their child is adapting and succeeding despite their limitations. Isn’t adaptation and overcoming limitations more solid measures of capacity and progress?

We need to cut folks some slack here and stop shaming things many of us have no control over. It’s fine to see our limitations, but look at how deeply we are able live our lives despite those limitations. It takes a great deal of real human tenacity to overcome all of the obstacles placed in our way when we have trouble with the basic skills mentioned here  and add to sensory issues, add anxiety, add shame, add bullying. Overcoming takes a kind of strength and intelligence that I’m nor sure can be measured, but should speak volumes about how capable an individual is. This is what really matters.

einstein 

[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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