My experiences writing this column over the past year have been fabulous. But it was daunting at first to put pen to paper to capture what so many people feel.
My first column talked about starting something new and the excitement this brings. But the reality is that the muscular dystrophy community is diverse. And the broader disability community is as wide and beautiful as the universe. Trying to capture the entirety of these communities has been a learning experience.
Entering 2020, I find myself 24 columns — with over 10,000 views — into this experience. I continue to receive more and more responses from readers, both on the website and social media platforms. This has helped me to grow.
It also has helped readers learn from others whose situations might be different. I hope that this year we can continue to share ideas.
If I could summarize my 2019 columns in one sentence, I’d say, “Society is missing the true definition of inclusion.” The Americans with Disabilities Act (ADA) was adopted into law 30 years ago. But significant societal barriers remain, insulating the able-bodied population from people with disabilities. These barriers are like walls that help to hide a true understanding of accessibility.
Four of my columns focused on accessibility issues:
These columns looked at various aspects of the term “inaccessible accessibility.” People with disabilities tend to avoid certain situations that are taxing and often degrading. For example, we know that air travel is physically and mentally exhausting. We know that hotels and other accommodations are often inaccessible. We see how even a more liberal Hollywood lags in diversity. Leaders do not understand that people with disabilities can play critical roles. And this also translates to the entire world of education and employment.
In all of these situations, we see that the marginalization of people with disabilities creates a barrier. People outside the disability community have limited interactions with people with disabilities. It makes it virtually impossible to understand a community that you don’t see or have access to.
As people with disabilities — already a smaller percentage of the population — avoid public venues, society begins to have a skewed perspective. What others see is a small number of people with disabilities. They also only see those who may go out more often, those who are more adept at traversing the landscape. What they miss is what it really takes for society to be truly accessible.
These are the things that I, and so many others, write about and advocate for. This is also why it’s so important to debate the power of words. Saying “I am disabled” is not an issue. But in a society for which the word “disabled” has become a negative, it becomes a different story. The societal view of disabled is inadequate and all-encompassing.
Yes, the ADA has been around for 30 years. So what is the answer when we continue to see such gaping holes in accessibility? The dilemma for me is that if society doesn’t see it, how will we solve it? My above argument is that we aren’t visible enough. And when that happens, it becomes difficult to get people past their ignorance and prejudice.
To quote the World Health Organization: “Disability is now understood to be a human rights issue. People are disabled by society, not just by their bodies. These barriers can be overcome, if governments, nongovernmental organizations, professionals and people with disabilities and their families work together.”
The dilemma is awareness. Awareness with elected officials. Awareness with business leaders. Awareness with the movers and shakers in that other world that exists out there, the world of those not having to deal with accessibility.
How do we proceed? Some time ago, I wrote about “Uniting to Effect Positive Change.” Let me know if you’d like to join the battle. The new decade is dawning, and 2020 will bring some real opportunities to change the equation. The entire disability community must come together.
Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to muscular dystrophy.
We are sorry that this post was not useful for you!
Let us improve this post!
Tell us how we can improve this post?