The Second Important Lesson I Learned (from Two Diagnoses I Do Not Have)

The motto of the Autism Self Advocacy Network (ASAN) is “Nothing About Us Without Us.”  This is in response to the numerous “autism” groups, and especially Austism Speaks, which generally include no board members who actually have any form of autism, and which regard autism as a terrible disease that places a horrible burden on the family affected.  The purpose of Autism Speaks focuses on supporting the families of children with autism and in finding a “cure” for this disorder. ASAN, as I understand it, promotes the acceptance of those with autism, as opposed to the stigmatization that an autism diagnosis now brings, and more importantly the inclusion of people with autism in their own advocacy.  Groups such as ASAN promote the idea that there is nothing wrong with a person with autism — that person simply different, and should be accepted as such.  All scales and measurements created by those who have never experienced being a person with autism are thrown out the window.  Terms such as “high functioning” and “low functioning” were created largely to describe how that person interacts with the world around them as compared to a neurotypical person, generally meaning how well the person with autism communicates verbally.  Additionally, any behaviors not deemed socially acceptable in neurotypical society can further stigmatize a person, such as stimming behaviors. In response to the negative stereotypes surrounding autism, in recent years especially with the assistance of the Internet, people with autism have begun creating their own community in which those traits commonly found in those on the autism spectrum, which can include anything from avoiding eye contact when speaking to extreme stimming (rocking back and forth, flapping hands, etc.), are no longer stigmatized, but simply accepted.  Yes, autism does make a person’s life more difficult in needing to interact with the world at large.  And having a child with autism, especially before the family begins to learn how to communicate with their child, can be a challenge.

But it is critical that the challenge is in dealing with the manifestations, such as communication, and not the challenge is the person herself/himself.

The second community I have learned so much from is much older than the growing autism community, and that is the Deaf Community and Deaf Culture.  Ostracized and generally sent away from home at a very young age, the Deaf Community began developing its own culture and its own ties more than 100 years ago.  Like any community, it has its own etiquette, idioms, customs, and history.  Deaf people have been banding together to support one another, and even kept their own language alive through the trials of the height of the Oralist movement.  And as with any community, there continue to be challenges, such as the introduction of cochlear implants and their impact on Deaf Society.

The important lesson that must be learned is summed up beautifully in ASAN’s motto “Nothing about Us without Us.”  Every time I read an article about disability on news sites or blog posts, it is always, always about the family of the person with a disability, and the family’s struggle to deal with their child’s disability.  Even when an article is trying to make a positive statement about disability, the struggles of the family are always included.  I was recently reading an article about a pageant for children with disabilities and not once were any of the children quoted in the article.  The only voice that was heard was that the parents.

Those of us with a disability need to begin to tell our own stories, and not just to each other.  We need to learn to insist on being included in the conversation.  I am not saying that the family of a person with a disability should be neglected, just that our voice needs to be heard too.  The TV show “Push Girls” is a good start.  But even at that TV show, we begin to run into a second difficulty: we constantly divide ourselves.

Individual organizations and groups supporting certain illnesses, disorders, diagnoses, etc. are valid and needed.  However, we allow ourselves to be divided into our individual disorders.  And so long as we divide ourselves, we remained weaker.

What people with disabilities need more than anything is to begin to develop our own community, our own Disability Culture.  Only when we join together are we strong enough to achieve goals that benefit us all, such as passing of the ADA.  People with disabilities of all types came together to lobby for that Act to be passed.  In the last 20 years we have seen great strides for people with disabilities, and their inclusion in the community at large.  But we have a long way to go.  If we continue to splinter ourselves, we will lose that strength that saw the ADA passed.

We need our own culture, our own community, because only by joining together can we prove to the rest of the world that there is nothing wrong with us.  Yes we may be disabled, a disability should be seen as a difference, just as race or sexual orientation is just a difference.  But before we can convince the rest of the world of this, we need to convince ourselves.

We are not less, we are different.

And what is more, we are proud.


One thought on “The Second Important Lesson I Learned (from Two Diagnoses I Do Not Have)

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