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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Sunday, July 27, 2008

 

Bi-Racial? Disabled? Blended? Acceptance Of Children "Not Like Us" But Who are "Part" of Us

Diversity training has begun on the popular airwaves. CNN's Black in America, with Soledad O'Brian, aims to express the many sides of living as a black or bi-racial person in North America. Watching it, I see a similar theme that may be helpful for parents with autistic children. It is the comparison of being black and having a white child or vica versa. It is the experience of a parent without any disability or experience of it, who has a disabled child. If our children are "not like us," then who are they? To which community do they belong?

I believe it is one of the major sources of tension out there -- why the "recovery" movement is so strong, why acceptance is so difficult. While not accepting the status quo is great in terms of pushing for acceptance and inclusion of disabled individuals, it is not that helpful when the movement takes a turn to fundamentally change the individual's genetic make-up -- to say, in essence, there's something ill, or wrong with you. You are sick and we have to fix and heal you. If we don't, your life will be hard. We've heard it many times -- there is a strong movement against calling disabled people ill. The medical model doesn't fit the human model. While medicine can help us feel better, it can't take human difference away. If it tries, it can't be successful. I'm one who believes that any "progress" in science will see its regression too. In other words, not only will there be ethical problems, but with every seeming "advance," there is also an antithesis. With the advent of our lives being extended, for instance, we have more disability -- this is not to say that disability is wrong, however, with the extension of our lives, it is natural. If you are religious or believe in God, one might say that only God knows why he creates what he does. If you are secular, you might believe that there is meaning, value and importance in the grand scheme of things, and that is still, perhaps like God, ineffable.

I believe that some of my family members have strong autistic traits. My father did not speak until he was six years old, for instance. He became an engineer and has exceptional eye for technological detail to the point of losing others when he talks about it. It is his obsession (sorry dad, but I think you are a brilliant). I crave alone-time and privacy and am much less social than my husband to the point that I think others may not understand me (I prefer to communicate more in writing and am not as reserved when I do so). As a child I used to play alone for hours and would twirl until I passed out (Adam does not twirl). I found idle chatter highly uncomfortable yet as I've become older, I've become better at persevering small talk. Like Adam, my obsessions have been words and letters. I invest in art with words in them or art that looks like it has been written upon. I am a big fan of Cy Twombly. I collect scrabble letters and typewriters. Because of Adam, my interests and habits have become more obvious to me.

So, I guess Adam, who is autistic in a non autistic family, really does belong. We share the same physical features. We even share personality attributes. Yet, he has a label and I don't (which may suggest the nature of labeling and why so many people cringe with labels -- they can help AND hinder). He is "autistic," while the rest of his family "is not autistic." He has a community that organizes conferences for and by autistic people. I cherish that for him. Maybe in a way, I even envy him. For the communities who must really stand and stay together become the strongest. I do not fully belong save for being his strongest ally.

Some people get offended when they hear "autistic person." Some prefer "I am a person with autism." Without re-hashing this debate too much about person-first language, I don't think it matters how we put it. It's the manner in which we put it -- the tone of our voice, and the way that that tone reflects how we feel about people, the words we put alongside autism. It matters that we all recognize that we are all the same despite our differences. We are all equal, even though our contribution and output may manifest differently. We all have the same rights, even if one person is less independent than another. It doesn't all fit into a nice convenient box, that may be true.

As such, I like the comment made on the CNN blog about pride. Autistic pride, gay pride, we all know why those movements have had to spring into action: because there has been too much medicalization and stigma of both, and a need for society to become familiar with the paradox of difference and same-ness. There is no "other." There are only variations of ourselves. So I found the hundreds of comments on this series really interesting in the context of diversity, pride, but most of all this sense of which culture do we become loyal to or do we identify with? In my view, why can't we belong to more than one?:

Lynn Whitfield
Actress

My daughter Grace and I watched the premier of CNN’s groundbreaking “Black in America.” I thought we would have lively discussions around many of the themes concerning black women in this country. However, when she saw the segments on interracial marriage and the children of those relationships, she had a visceral response.

I saw an activist being born.

Grace seemed ready to adapt James Brown’s black anthem to her cause: “Say it loud, I’m blended and proud!” I saw my daughter stand up for the equality of blended people like herself in all her olive-complexioned, big curly afro-like glory. She went immediately to the computer with dignity, passion and everything but a fist in the air...


---

As a parent of biracial children, it feels really good to read such an article. That’s exactly the way I want my children to be about their heritage: proud of both!
It is definitely unfortunate that you have to make a choice between different races. There are still a lot of administrative papers which do not have an “Other” section. Very confusing for the parents and children.
But after all, aren’t we all from Africa anyway?


-----

I am proud of having a child with autism/an autistic child. I believe that being autistic forms an important part of his experience with the world around him -- both from a sensory point of view as well as how he will be treated and regarded by others. He will grow a natural sensitivity to this and his ideas will be shaped by it. It is why I say that he is an autistic person. Jenny McCarthy, because she thinks autism is a disease, and is afraid of it like cancer, is appalled a the notion of calling a child autistic. I see her view as a denial of our children's right to be who they are and accepted for that. I personally think it is wrong for a parent to think disability, or autism, is a bad word. I think the disability community, much like race, do not identify with the cancer comparison in the sense of being ill, however, it is interesting to me, after being through a stage one cancer experience myself this year, that people with cancer will identify themselves as being "cancer survivors" in order to explain who they are by virtue of their experience with cancer. Going through cancer, as my mother and I can attest, indeed shifts something within you. The experience forms who you are. And I don't see the problem with that.

I want Adam to be proud of himself as he is. He is part of a family who shares very many of his traits --inward and outward -- yet he also appears different in the way he expresses himself and moves. Autism may be similar to the experience of being bi-racial or "blended," if you will. Autism is a part of all of us.

Yesterday, Adam sat through the entire movie, E.T. Watching with him made me either believe Steven Spielberg is really autistic, or that the man really gets it.
Usually, Adam can get into 30 minutes of a movie, and he's off doing something else. Yesterday, he would watch, then giggle, then roll around the couch, then snuggle with me -- enough antics to make many adults think that he couldn't have been really paying attention, but I could tell he was. There were also moments when he would repeat the lines. He would watch the screen and be still. Therapists tend to use the same stories over and over again to assess an autistic person's comprehension of a story. And yet, when Adam sees something new, or more complex than people thinks he will understand, he really gets the gist of things. This typed conversation I had with him yesterday illustrates this:

Me: "Adam, I really enjoyed watching the movie with you today.
Adam: i like toad.
Me: what was the alien's name?
Adam: et
Me: E.T. had lots of feeling and a very big heart. E.T. had lots of love for others.
Adam: Et was the guy yes
Me: E.T. could hardly speak. In a way, E.T. is like you. He understands but finds it hard to talk.
Adam: E.T. was question
Me: Do you think you and E.T. are similar?
Adam: E.T. was the want
Me: What is want?
Adam: E.T. was the want to speak.
Me: E.T. wanted to be able to communicate. What else did E.T. want?
Adam: et wanted to go away.
Me: Where did he want to go?
Adam: home.
Me: yes, we all want to be home and be with people who are like us.
Adam: i people."


Indeed he is people, a person. Adam is Adam and he is all of us.

17 Comments:

Anonymous Mary said...

"I people" made me cry.

thanks for this.

1:47 PM  
Blogger Club 166 said...

Great post, Estee.

I hadn't really considered it before, but perhaps it's because we are parents thru adoption of biracial kids that we were predisposed to "accept them the way they were" and not look to change their essential nature.

Joe

7:01 PM  
Anonymous Alex Plank said...

I agree with most of what you said with one exception. I do think the language we use plays an important role in getting our message across. Sure, tone of voice is an important factor in communicating our ideals but language choice is just as important if not more so.

Using the term 'autistic' is a deliberate and important choice by the autistic community because of what "person with autism" communicates. Extending the comparison to gay pride, you don't hear a gay person being referred to as a "person with gayness." This is because person first language conflicts with the way the gay community identifies. Likewise, person first language conflicts with the autistic community's ideals and identity.

7:30 AM  
Blogger Estee Klar-Wolfond said...

Alex,

I for one agree with the use of autistic person and understand the reason for its use. When I was in San Diego, an autistic woman did not prefer to be called that. She preferred to be called person with autism. I do believe words are very important, but also, I believe that their context might even be more so. If we are talking about barriers to understanding, and ultimately access, sometimes a barrier can be one's mistaken interpretation of "autistic person," much like the way Jenny McCarthy has missed the point in its use.

Part of my strategy is to communicate the message, which sometimes words and terms alone do not. In other words, is it important for others to understand the issues facing autistic people? Yes. Does language convey the message alone? Sometimes, I don't think so. We have to constantly rephrase the message, use different language to accurately express the depth of the issues and ideas. That is why communication is so difficult!!!! Even for people who are fully verbal!

So, as a person who has listened for a long time and completely GETS the reason for the use of "autistic person" (and, by the way, keeps raising the issue at every meeting and conference I attend), I also want to enable others to join the dialogue to understand just WHY that is so important without their own personal barriers and defences going up before the message is heard. I think inspiring dialogue as you have done here in the comments section only adds to the understanding and I thank you for doing so.

7:51 AM  
Blogger Joanna said...

This conversation that you had with your son was very touching... I really can appreciate the way in which you engaged him in conversation from my experiences in working with kids and adults on the autism spectrum. Simply asking yes/no questions all the time aren't going to get anyone anywhere, and you helped him to make connections and express himself. So wonderful to see, I am really loving your blog!

9:46 AM  
Anonymous Andrea said...

Your Adam does seem to be getting it and communicating with you effectively. That was a lovely conversation.

My kids are biracial and my son is an autistic person. Although we live in a place that isn't exactly diverse, race comes into play much less than Gus's differences from his peers. It will be interesting to see if it (race) and loyalty to one over the other becomes more important to them as they grow.

I really appreciate your writing.

5:43 PM  
Anonymous Anonymous said...

Estee,

Adam's conversation also made me want to cry. Adam is indeed all of us.

HIK

8:21 PM  
Blogger Wendy said...

Excellent post!

My husband and I have long hated the word "normal" when used to describe children who are not autistic. Our daughter is not abnormal; she is completely normal for herself. And while I would take away some of her challenges so that she could function more easily if I could, I would never want to change the essential parts that make her HER. How much autism could you take away before you were left with something different from what you started with? I love her regardless, and watching her grow up is an adventure.

So here's to our kids, those with or without autism; may each of them believe in one unshakeable fact: "I people."

Wendy, mom to Diana

2:34 PM  
Anonymous Echo said...

"The medical model doesn't fit the human model." That's a great point!

Thank you, Estee.

1:24 AM  
Blogger Estee Klar-Wolfond said...

Off topic, I cannot write new posts until Blogger unlocks my blog. They are doing, apparently, a "spam blog" search. I filled in their form yesterday, however, Neither Adam nor I have access at this time. I hope that Blogger unlocks me soon. Funny this happens...I've been blogging since 2005!!!!

9:28 AM  
Anonymous Anonymous said...

Estee:

Has your blog run out of space? Hope to hear from you soon.

7:49 PM  
Anonymous ADD/ADHD symptoms said...

waaw..thas nice..thx, keep it up

6:57 AM  
Anonymous Anonymous said...

As a 13 year old child with Asperger Syndrome said in

"Special Feature Interview with Douglas Giesel and An Update Interview with Lewis Schofield"

at www.mic.mypodcast.com

"You can change a lightbulb, but you can't change AS."

12:05 PM  
Blogger groovyteach said...

"I people" made me cry. I often wonder about how my daughter (who is also autistic) feels in comparison to others. She's three and is beginning preschool. She loves it. I hope she continues to do so.

9:49 PM  
Anonymous Tanya Savko said...

This is such a beautifully written post. I feel the same way about using the word autistic to describe my son. I understand him better and appreciate him more. (And he has loved E.T. for years!)

2:00 AM  
Blogger Geneva said...

Please help an autistic child who is being retained, and forced to repeat 4K, even though he passed, because his birthday falls 24 days late.
http://www.thepetitionsite.com/1/due-to-being-born-24-days-late-autistic-child-must-repeat-4k That is the petition site to sign.
If you have any questions, or want the full story, I am putting up a website hopefully this weekend
www.pcveracity.us
Or call me,
I'm the mother of the child this is being forced upon.
850-381-9844
Honestly, you're my greatest hope for help. Reaching out to people on the internet and getting support is our best chance to help my Beau, and prevent this atrocity from happening to other children, who will be equally devastated.
Thank you for your time,
Geneva Robinson
Panama City and Chipley, Fl.

12:39 AM  
Blogger farmwifetwo said...

I prefer "has autism" b/c I don't feel someone should called by their diagnosis. They have a name, and that is who they are, not the label/diagnosis. I appreciate that we live in a society that loves labels, and people that love labels as a means to belong. Maybe one day we'll be "Canadian" in this country not with another country/race/religion as a qualifier. Also, I find that "autistic" conveys an impression on MR/intelligence/independance/or lack of... assumptions that can be damaging and not helpful, that may or may not exist, depending on who you are interacting with. IMO that is one of the reason's it is difficult at times to get them properly accommodated/educated/taken seriously/heard.

I am nearly finished "Autism and the Myth of the Person alone". Came from the TO library system - ILLO. I have added it to my "to be bought list".

Thanks for the recommendation.

S.

7:57 AM  

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