All day I think about it, then at night I say it. Where did I come from, and what am I supposed to be doing? I have no idea. My soul is from elsewhere, I'm sure of that. And I intend to end up there...Who looks out with my eyes? What is the soul? I cannot stop asking. If I could taste one sip of an answer, I could break out of this prison...I didn't come here of my own accord, and I can't leave that way. Whoever brought me here will have to take me home.

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11 November 2009

Stirring Up Action: The Winds of Disability

The greatest disability is not of the body, but of a closed mind...

From whom do we access information that leads us to gather facts and to form opinions about disabilities? Do we turn to academics, doctors, instructors, and therapists? Governing bodies, media, and schools? Family and friends? How do we process and understand the varying approaches, facts, and opinions? Who do we decide will bear the most weight in helping us to create internal dialogues and references for understanding disability? And what factors lead us to believe one source, or sources, over another? Do we think with our hearts? Or do we think about what is acceptable to mainstream society?

Where are the voices of the disabled? And why is their public representation often meager, or token, at best? Why does one need to go through a personal awakening and revelation to conclude that the voices of those who are disabled not only exist, but are strong, valid, and vibrant?

Beneath the myopic confines and constructions of those who claim to know best are the whispering voices of the disabled. Voices that, once you stop to tune into them, become very loud, honest, insightful, meaningful, and real.

The number of books written by academics and clinicians that are marketed to parents of young children who are disabled is massive in comparison to the number of books written by disabled people. This is a typical example of the the damaging myth that disabled people cannot possibly speak for themselves. Something as innocent as a book is a prominent reinforcer that disabled people should be seen (if even that), but not heard.

Media plays a colossal role in shaping public perception. Unfortunately, disability in the media is often centered around fear and pity, or treated with benevolence and do-goodery. Well-intentioned or not, such messages are adverse, ruinous, and useless in raising and shaping effective and positive mass consciousness. Conditioning people to mourn the disabled counters proactive messages and stifles the chance for understanding the scope of disability. How is the disabled self-advocate, who has fought hard for the right to self-esteem, supposed to feel accepted and welcome when media and medical establishments often paint all conditions with the same authoritative brush? The Disability community has waged a grueling crusade (which is often challenged, ignored, or silenced) for equality, integration, respect, and support.

Unfortunately, most people are often exposed to only a small handful of persons experiencing a disability. With such little contact, that may be laden with discomfort, misunderstanding, and stigma, we are sheltering ourselves from the rich reality and spectrum of disability. 

As a person who is both on the autistic spectrum and deaf, I have tolerance neither for illiterate comparisons (such as comparing autism to a fatal car accident), nor being regarded with suspicion when I do not act or appear the same as other autistic or deaf people that a person has met, lived with, or seen. Why is it okay with so many people to view disabled people with disbelief and/or skepticism when we do not fit a mold that is often not created by us in the first place? Why are we often judged with such a heavy hand? And who decided that it is okay to take away our voices and to speak for us without including us?

Challenging benevolence can lead to belligerence, with indignant voices saying: You absolutely cannot challenge altruism, charity, do-goodery, and walk-a-thons for the disabled! To that, the Disability community says: Oh yes we can. Nothing About Us Without Us!

The winds of disability are calling all citizens to action...

Norman Kunc, a well-known speaker on the topic of disability, focuses on the educational rights of students with disabilities, as well as how communities and schools can build a sense of belonging devoid of false allegiances and perceived common enemies. Norman is an especially moving and powerful speaker who owns his voice. He once said, "No matter how far technology advances, disability will always be here because it is a normal part of human diversity."

Fortunately, it is becoming more common for governing bodies to make an effort to reach out and include disabled people (and more than just one *token* disabled person) in their decision-making processes. For example, the Oregon Commission on Autism Spectrum Disorder has taken strides by including autistic self-advocates on both their committee and subcommittees.

Let's step forward to nourish and promote disability advocacy and empowerment, as well as leadership and public education. Support the voices of disabled people. Collective thinking and action is the key to transforming the hearts and minds of humankind in regards to the place and value people with disabilities have in society.

For further exploration:

American Association of People with Disabilities (AAPD)

Self Advocates Becoming Empowered (SABE)

TASH - Disability Advocacy Worldwide

It is a fine thing to have ability, but the ability to discover ability in others is the true test. -Elbert Hubbard


  1. Great points and questions Elisia.

    "Unfortunately, most people are often only exposed to a small handful of persons experiencing a disability. With such little contact that may be laden with discomfort, misunderstanding, and stigma, we are sheltering ourselves from the rich reality and spectrum of disability."

    Yep, that's where where we need to focus our efforts. Most people who count are like that anyway. Based on the definitions I can think of for disability that population of people who count are still the smallest in number but they're the ones who need to hear us and understand like you say.

    The disability community is asking to be a part of the media too soon. Not in terms of time but in terms of the steps that need to be taken for real and radical change. When we accept and demand the same standards that promote exclusion in order to be included in the media, we do ourselves a great disservice.

    The Disability community is very clear about "Nothing About Us Without Us." but the standards for being US (as far as even being part of the community) are still too exclusive and too similar to the ones used by the population whom we are trying to educate and change.

    Once we are clear about our message and inclusive of more people, we will have a voice that rings true so it will be much harder to ignore. Demanding a place at the table where people listen (poltitical arena/media)when you represent too few people due to exclusivity and you are exclusive when you're trying to teach inclusion, will make the real and radical change that is needed just that much more difficult to attain.

  2. Great post, just sent it on to the listservs!

  3. Thanks for your support everyone! :)