This week marked the 21st anniversary of the passing of the Americans with Disabilities Act. It’s amazing if I think about it how much we take for granted – access to buildings and services, transition planning, improved school accommodations… – was not available everywhere before this act was passed.
I’ve heard a few people with Moebius say that they don’t feel as if they are part of the disability community, but I feel the opposite. I was lucky to attend my state’s Youth Leadership Forum for students with disabilities in high school, where I learned about disability history and met hundreds of other students with disabilities. We often exist in a vacuum – most times, we are the only person with a disability or one of very few in an organization or activity. I found that becoming involved with the disability community gave me much-needed perspective when I faced difficulties due to having been born with Moebius syndrome.
In light of this, I also think it is important to recognize where we fit in with the larger disability community and follow developments, legislation and advocacy related to both craniofacial conditions and other rare disorders. It makes me feel as if I am doing all I can to remain educated and involved. And to me, that is the objective of the ADA: to allow people with disabilities to be active, involved community members.
Natalie Abbott 
Sensing a disconnect between Moebius and the larger, far more generic 'community' is – for many with Moebius – a historical reality – one that is best appreciated via experience. None of the large, pandemic disability advocacy groups has recognized the legitimacy of inclusion within its ranks for people with visible differences. There's a food chain of acceptability within the disability community – from acquired disabilities (such as SCI) of athletes towards the top, and congenital disfigurements, mental 'illness', and developmental delays towards the bottom. It's easier to "fit in" when you are a cute, smiling kid with a bald head, fighting cancer … than when you are born with disfigurement, speech disorder, etc. How much 'history' do you personally have re: experiencing Moebius in complete isolation, without access to any support group, any 'anything' related to the syndrome – where your caregivers themselves have no support? There is an intense, profoundly experiential difference between growing up with a disability that has a name, a support group, access to others, etc., than growing up *knowing* you are absolutely 'the only one', never ever hearing of anyone else that has a facial paralysis, and a family/community that has no idea what to say, what to do, etc.During the civil rights era, young blacks tried to engage the black communities in the south into becoming more 'involved' in civil rights. But the civil rights workers found very little desire to "get involved" – a real "resistance". When I first heard of this, I was incredulous with shock – *I* wouldn't resist!!! what is ***wrong*** with THEM??? "How could they NOT want this…?"Because … "they" lived a DIFFERENT history of intense Jim Crow, where the lived experiences gradually become one with one's soul. You are where you are, regarding disability rights, etc., because of all those who have gone before you. You have a support group because people ahead of you knew the pain of being "the only one". They are alive because their parents didn't institutionalize them. …. … We perhaps see the greatest difference between us and our parents' generation when we are young adults. We *know* we will do things different from them. These are healthy parts of becoming an adult; claiming one's place in the world.BUT … adulthood, like childhood and adolescence before it, brings learning that doesn't come in books. It comes in "aha!" moments of wordlessness when something that seemed insignificant, incomprehensible, etc., *forever* … makes sense in a way one could not have understood in depth, earlier.Sadly, we live in a society that worships youth and "high tech" over wisdom. One blessing of really getting to know Moebius is that, having it, one doesn't have to become attached to beauty for self-worth, self-identity. It is indeed possible to feel whole, worthy while having ANY disability.So – if you 'feel the opposite' regarding Moebius and the larger disability community, don't use dualism as a "right/wrong" narcotic. In fact, "observe" it so well that you gain a sense of the inner life lived by those who don't identify with the current disability rights movement. In doing this, you will gain appreciation – and wisdom – in the views of others.
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I told you these were my thoughts, right or wrong. No more, no less. Probably wrong on many accounts… but I felt like writing them.
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