Disability identity and difference: making space for change

When I am asked how I ended up in the field of developmental disability, I generally answer with the story of my older sister, Samantha. Born on the same day but two years apart, we were treated as twins throughout our life. More than that, we were treated as two halves of a whole.

Growing up, I looked up to my older sister. She was beautiful, clever, strong, funny, outgoing, passionate, intelligent and caring – she also happened to have a developmental disability. Samantha was born with Arthrogryposis, so she struggled with physical challenges as a result of weak muscle tone, clubbed feet, and asthma.

On a personal level, I felt her struggles did not suit her soaring spirit. I watched first-hand her battles to overcome both physical and social obstacles, to ultimately become engaged, own a home, and pursue her Master’s degree in Psychology. It is through her that I came to know just how much of a difference developmental disability services and supports mean in the lives of families and individuals with disabilities.

That is the truth… but that is not the whole truth. What very few beyond my close family know about me, and something that I never mention in those casual conversations with other professionals, is my disability. I grew up with what might be considered an invisible disability, epilepsy.

I was fortunate that my epilepsy was controlled by medication. This provided me an option Samantha never had – the power to keep a disability more or less hidden; something I did and continue to do. It has become clear to me that concealing my disability as a child, at a time when it was a real part of my everyday existence, and the fact I still don’t openly talk about it are two sides of the same problem. My silence has spoken volumes about my awareness of the culture surrounding disability. And, to a great extent, my silence is a symptom of an incomplete cultural transformation for individuals with disabilities.

Growing up, neither Samantha nor I knew about the history of individuals with disabilities. No one ever sat us down and put our disability in any historical context. This narrative is not something taught in history class or discussed on the local news. Even now, after years in the field, I am still learning about these dark chapters of days gone by. Only recently did I realise that there was the very real potential that my sister and I could have been condemned to live our lives in an institution. We have come so far so fast that it is easy to forget that only thirty years ago, individuals with disabilities were systematically oppressed, segregated, and denied their basic human rights.

The past has left an irreparable scar on society’s feelings towards individuals with disabilities. Although we might not have heard about the horrifying truth of what would have happened to us had we been born a generation earlier, we felt it and we instinctively knew what it meant to have a disability. We knew it just as children always know what is acceptable and what is not; by the culture. Those subtle and not so subtle words and behaviors of those around us that shaped our values and beliefs and told us how to approach the world. In spite of a loving family that tried their best to ensure that we were treated equally, the culture told us that having a disability was, quite simply, bad.

Everything from the subtle pity and fear in the way the teacher looked at me as my mother informed her of my epilepsy and how to handle a seizure, should one occur, to the much less subtle way our school wanted to ship Samantha off to a ‘disabled school’ rather than support her to be educated alongside her sisters; it was clear that having a disability changed the way others looked at us and that lead to people imposing unnatural limits on our opportunities.

The plight of individuals with disabilities is a civil rights movement, and a very young one at that. It has only been through standing on the shoulders of civil rights movements such as women’s rights and African American rights that disability rights advocates have made the case that the worth of an individual with a disability is equal to any typical man, woman or child. Those supporting disability rights have made the case (and continue to) that we should essentially see no differences between individuals with disabilities and those individuals already valued and accepted as part of the larger community.

On the surface, this may seem like the right approach to gaining acceptance but in reality this way of thinking has become a barrier. The problem is not the message, but that this message of ‘sameness’ never moves into a more mature discussion of the value of differences. I have come to see that, after advancing so far in only a lifetime, the disability civil rights movement has stalled, and that has created a culture with a different kind of oppression for individuals with disabilities.

Although well-intentioned, the concept that individuals with disabilities should be seen as the same as everyone else leads to a culture that denies some part of that individual’s identity. Disability is a part of the individual identity. Saying that part should be ignored unintentionally reinforces a sense of shame about disabilities. This culture that tells individuals with disabilities that that part of them must be bad is something easy enough to feel as a child struggling to accept the disabled part of oneself. It is the greatest cultural barrier to the success of individuals with disabilities.

Devaluing disability as a part of identity is rejecting an element of a whole populations’ human experience to make the dominant population more comfortable with ‘inclusion’. This kind of ‘inclusion’ is not true to the spirit of what individuals with disabilities desire. A more truthful term for what we have unintentionally created is a culture of ‘assimilation’ where the part of oneself – the part that might make others uncomfortable – must be hidden to be overlooked.

This ‘assimilation’ is something that complicates our work as communicators. As we seek to build a sense of community among those impacted by developmental disabilities, we run up against a cultural wall. The unspoken message pressuring those impacted by disabilities to ‘blend in’ also causes those that might otherwise speak up for awareness to feel that self-advocacy ‘rocks the boat’ too much and that it is better not to acknowledge or to be associated with disabilities.

The final step in any effective civil rights movement is something that cannot be done by outside forces; it must come from inside the developmental disability community. Empowered individuals must take the lead in asserting their place within society by embracing their own unique culture and a sense of pride in who they are and what their individual and collective contribution is to the larger population. An essential precursor to the next phase of disability awareness and acceptance is a cultural shift.

Professionals in the developmental disabilities field, family members and concerned community members have the ability to set individuals with disabilities up for success in more ways than one. We can initiate this cultural shift and empower individuals with disabilities by giving them the tools to redefine themselves. We are vital in providing an environment where individuals with disabilities can have ownership of their differences as unique and valuable in their own right.

Andrea McKay is the president of the Public Images Network, a not-for-profit that raises awareness about people with developmental disabilities in the United States. She can be contacted via her LinkedIn profile.