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Cheryl Wills

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Siblings on the Frontlines for People With Disabilities

Posted: 08/25/10 01:01 PM ET

My brother Clarence has autism. He is 41, I am 43. Many years before the influential National Alliance on Mental Illness formed in 1979, and before Mental Health America launched its powerful online community this summer, it was left to sisters and brothers of those with disabilities to put up our dukes and protect our defenseless loved ones from bullies and discrimination.

Years before I even reached puberty, I had to learn to fight for the rights of my brother who was openly derided as "Cheryl's retarded brother." Society's expectations for my dear brother, who wanted to be a cartoonist, were so abysmally low that my other siblings and I had to form a protective web of love and support around Clarence, and encourage him to live out his artistic dreams in spite of those who sought to relegate him to a subhuman status. Along with our mother, we created a defensive strategy to ensure his inalienable right to life, liberty and the pursuit of happiness. As he grew older in the 1970s, a network of dedicated mental health activists joined in our advocacy.

Fast forward to just days ago. A small army of siblings of children and adults with disabilities gathered at a swank hotel in Connecticut for the International Sibling Conference. My brother Clarence and I were invited to be the keynote speakers. About 150 sisters and brothers -- mostly adults -- traveled from as far away as Australia, Canada and Japan to network and share empowering and heroic stories that are not widely reported in the mass media. The event was a powerful reminder that siblings have emerged as a mobilized advocacy force -- a force to be reckoned with.

As I introduced my brother to present his prepared remarks, I saw a sincere "aw shucks" expression flash across his sweet face. He bounced on stage with great enthusiasm and read the speech I had typed out for him. The little boy, who once banged his head against walls so violently that I had to physically restrain him from hurting himself, delivered his lines with ease, precision and passion. The youngster who ran away from home in a fit of rage and confusion so many times that all the cops in our neighborhood precinct knew and empathized with our widowed mother, paused between every line to allow the audience to absorb what he was saying. It was a needle-on-the-record moment for the audience, and especially for me. Clarence received a well-deserved standing ovation.

The audience was further delighted when my brother embraced Chris Burke, an actor with Down Syndrome who is perhaps best known for his groundbreaking role as Charles "Corky" Thatcher on the hit TV show "Life Goes On." Turns out they first met more than 25 years ago during special education programs at camp in New York where they acted, sang and danced on stage. Startled by their unexpected reunion, the men embraced with an affection that touched everyone in the room.

Only weeks before this heartwarming event, I was invited to host a concert event at the Apollo Theater in Harlem that headlined two bands, Flame and Potential Unlimited, music groups with members who have disabilities. The Apollo was packed to the rafters with people with disabilities as well. Before I had agreed to emcee the event, I told event planners that I wanted my brother Clarence to co-host with me; I subtly indicated, "No him -- no me."

So, on that beautiful summer night, on one of the most famous stages in entertainment history, my brother stole the show. Clarence charmed and mesmerized an audience that was struck by his charisma and stage presence. But I was not surprised; I always had faith in my brother's abilities. I stood back on that hallowed stage and watched Clarence dance his heart out. And that's just how I (and all siblings of those with disabilities) want it to be. Autism is just a situation we deal with, not a curse. We demand that our loved ones live with freedom from fear, and maintain the right to express their creativity. But any fool who dares to touch one hair on our siblings' head, or uses the "R" word, risks getting a severe ass-kicking from their most ardent defenders.

http://www.siblingconference.org

 

Follow Cheryl Wills on Twitter: www.twitter.com/Diefreethebook

My brother Clarence has autism. He is 41, I am 43. Many years before the influential National Alliance on Mental Illness formed in 1979, and before Mental Health America launched its powerful online c...
My brother Clarence has autism. He is 41, I am 43. Many years before the influential National Alliance on Mental Illness formed in 1979, and before Mental Health America launched its powerful online c...
 
 
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11:00 PM on 09/02/2010
This article is amazing and makes me want to work with kids with special needs so much more.
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LaurieAnn
Charity is NOT a substitute for justice.
10:06 PM on 09/01/2010
Lovely article Cheryl. I am so glad that you and your brother have each other. My son who has autism is an only child and not a day goes by that I don't wish that it would have been possible to give him the gift of a sibling. But for various reasons it was not to be. Keep telling your story; stories are important.
02:21 AM on 08/31/2010
That picture at the top was cute. I used to wrestle with my little Brother like that.
02:17 AM on 08/31/2010
There are few Blessings in life that can compare with having a loving Brother and/or Sister. When you grow up & your parents are gone, they are the last link to your past. Don't ever become estranged from your Siblings !
07:47 PM on 08/27/2010
Thank you for sharing your story. it's exciting to finally hear the lives of families with autism and not just the science. I just finished a fantastic and touching book about a woman and her older sister with autism. As the title implies, it is a true love story from a sibling perspective. her site is great too: http://www.howtobeasister.com. the author also blogs for Psychology Today. Thanks again for your perspective.
07:39 PM on 08/26/2010
Thank you from bottom of my heart. What you and your mother did to protect your brother growing up is extraordinarily difficult in a world that does not understand true nature of disability. I had never heard of you or your work before reading your post, but it is very commendable and extremely inspirational. Thank you again. With people like you, your mom and your brother I see a hopeful future for the world. Usually we see those that are the most unkind to people who have special needs are usually the people with the most to hide and in essence bullies --- thank god for strength like that of your family -- a shining example for us all to follow.
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naschkatze
A free man creates himself.
12:40 PM on 08/26/2010
We have an adult daughter with Asperger's Syndrome (high functioning autism) with normal intelligence, just, well, a few oddities about her now. We had to fight to mainstream her into the regular classroom while she was growing up, and, frankly, I think my husband and I have been worn down in life over the process. But we are happy now that we weren't led down the primrose path and put her into special education. Today, she holds two permanent jobs in this horrible period of unemployment making $10 an hour, and she does seasonal work too. She lives on her own, she pays taxes, and she has a small circle of friends who aren't autistic. This latter is so important because autistic people have a weakness in social ability. So, thank you for your article. I hope you encourage many others to support their family members who are autistic (at whatever degree). It is the key to their future well-being.
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thinkingwomanmillstone
great, green, globs of greasy grimey GOPerspeak.
07:24 PM on 08/25/2010
When my now adult daughter was in middle school...she was assigned.as usual, to do a report on Autism. In a misguided effort at compassion and empathy building, the teacher introduced her by saying," I want you all to listen to how much harder it is for the families of children with autism. They can't take their brothers to McDonalds are have a family vacation or any of the normal things that you all get to do." My daughter immediately informed her that she would match her brother's behavior versus anyone in the room and that we do all of the same things that other families do with a little planning. Brothers, sisters, cousins, friends are all so important to spread the message and keep the advocacy going. Our family members are here and are not to be hidden away or ridiculed. They are to be celebrated as the wonderful people they are and allowed to experience life in all its fullness. All my best to you and Clarence.
02:43 PM on 08/25/2010
I am not a sibling but am a "sib in law" and I had the opportunity to attend the sibling conference in early August, where I heard both Cheryl and Big Boy speak. It was a fulfilling and important event. The more networks that we are able to build, the more we will be able to reach out into the community to support people with disabilities and their families, and the more will we be able to send the message that disability is a natural part of life that shouldn't limit our opportunities and choices.
01:09 PM on 08/25/2010
Thank you for this. It gives so many of us reason to continue the good fight.
All the best to you and Clarence.
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sharonlmomofthree
12:58 PM on 08/25/2010
As the mother of a 13 year old son with autism, I agreed with everything you have written. Autism is just a situation we deal with, it is not a curse. My two girls, aged 13 and 11 have always had a hard time dealing with a brother with autism. I will have them read this tonight. I also have a hard time trying to convince them that they are not alone.
12:49 PM on 08/25/2010
This is the blog I've been waiting. Cheryl you and "Big Boy" are role models to siblings with disablities. For years disabled people were pushed to the back, dare I say hidden and all but discarded from the world. But recently we have seen what they are capable of doing. Many are artists, actors and singers. Many hold jobs and can be productive members of society. You and your brother provide a voice to them and an example to those who would otherwise remain ignorant to their worth. I applaud you.
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DJ Jaffe
Founder, Mental Illness Policy Org.
12:42 PM on 08/25/2010
Wow. Great piece. I didn't know about the personal connection. As someone who has been advocating for people with *serious* mental illnesses for years, I know how right you are when you say 'Siblings are on front lines". Thanks for bringing this issue to everyone's attention.