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30 Oct

Honoring Visibility During Disability History Month & Disability Employment Awareness Month

October is Disability History Month, but it is now more widely celebrated as National Disability Employment Awareness Month (NDEAM). This month marks a celebration of the contributions of Disabled People throughout history. This year marks not only the 75th observance of NDEAM, but also the 30th anniversary of the Americans with Disabilities Act (ADA). However, much of history has been sanitized of Disability and Able-bodied people are often unaware that many of the historical figures they cherish had disabilities.

 

We all know what Disabled People are capable of because we have been taught about their exploits all our lives, we just weren’t taught to think of them as having Disabilities. What would our country be if not for Harriet Tubman? What would music be without Beethoven or Blind Willie Johnson? What of art without Van Gogh, Kahlo, or Pollack? Where would science be without Da Vinci, Einstein, or Hawking? FDR was not the first Disabled President. Washington, Jefferson, Lincoln, and Kennedy all had disabilities. It took a Disabled general to finally end the eternal empire of Rome. Throughout history, every revolution in philosophy, technology, every great adaptation has had us at its fore. Disabled People are humanity’s existential astronauts. The experience of living with a Disability requires specific problem solving and leadership skills that are directly applicable to professional settings. 

The reason that we celebrate our history and seek to raise awareness about employment is to challenge the idea that our accomplishments are always in spite of our disabilities. The lives of historical figures with Disabilities call out emphatically and resolutely – we are needed, our experience and skills have value. We are complete, whole individuals just as we are. Disability in and of itself is neutral – it has both positive and negative effects. The value in it comes from our lived experience.

Those of us with Disabilities are confronted by challenges and obstacles every day. For many of us, the source of our greatest struggles isn’t from our medical conditions, but the obstacles that society puts in place. In order to adapt, we must direct others to help us complete projects and perform tasks just to get through life. Today, Able-bodied people often are not sure what Disabled People are capable of, or how to act around us. When people meet me, they sometimes feel anxious at first. They are not sure how to greet me. They dont want to offend me. I respond with a smile. Although I dont have arms, how could I ever be offended by Hello?”  

Aimee Mullins paraphrases Darwin, a fellow Person with a Disability, to understand the place of Disability within the natural world. Darwin argued that the “fittest” within any species aren’t the biggest, nor the fastest, but those most able to adapt. Living with our Disabilities gives us the skills and abilities to lead others and to seek solutions in novel ways. When our work groups face adversity, for us its just another Tuesday. We don’t want to be devalued, nor do we want to be put on a pedestal. Either one creates distance between Disabled and Abled. Instead we want to be seen as we are, whole human beings who go about our lives just like everyone else, but just happen to have Disabilities. The experience of living with a Disability gives us a unique skill set and knowledge base that is needed. We are the exception that proves the rule.

Living with a Disability requires creative and collaborative problem solving, confronting obstacles head on, developing a relationship with adversity. Take for example, Elise Roy, a Deaf designer, who believes we have the design process backwards. Designers usually design products for Able-bodied people, and then adapt products to the needs of People with Disabilities as an afterthought. Roy creates successful designs for Able-bodied people by first designing for the needs of Disabled People. As a result, she creates products that are safer, more comfortable, last longer, and meet the needs of more customers.

Hiring employees with Disabilities isnt charity or an act of fostering goodwill in the community. Hiring Disabled People is a shrewd business decision. The first nationwide employment study found that, out of a perfect score of 3, Able-bodied workers scored 2.31, while employees with Disabilities scored 2.3. Able-bodied employees scored a measly .01 better than People with Disabilities. Research shows that most accommodations for Disability are small. However, even when they are not, when the increased insight of having more stakeholders at the table with a broader perspective is combined with the added customers who can take advantage of the same accommodations as Disabled workers, businesses come out ahead. In a personal example, I had a company create a courier bag for me that was made from bulletproof material because I am hard on bags; I put a hole through it in a week. We have a saying in my house, It might be bulletproof, but its not Matt-proof.” The company took the insight it received from working with me on that bag to create new and better products for their customers.

We live in a capitalist society where being economically self-sufficient is the right to self-determination. A persons value to society is largely based on what they can quantifiably contribute. In response to World War II, the US government conceived of People with Disabilities as a superfluous workforce. A reserve population, educated to take on white collar jobs, the idea was that People with Disabilities would free women to fill the physical labor roles vacated by men fighting in the war. The result is that many of our social policies and societal views still have this undercurrent.

There are more supports and programs to educate People with Disabilities than there are to employ us. These programs are easier to access for white men with Disabilities than Disabled People of Color, who are doubly or triply discriminated against. The way that society chooses to construct everything from healthcare to housing to employment seems specifically designed to prevent Disabled People from being participating members of the public sphere. Qualifying for critical healthcare, demands that a person not earn beyond an unrealistic limit, that then prevents them from being able to afford housing. This Gordian Knot is a major reason why, although there are over 58 million Americans with Disabilities, we are rarely seen out and about. There is a question posed in the Disability community, “Have you ever noticed that pedestrians on a city sidewalk tend to clump together, and there are spaces in between? Those spaces are meant for wheelchairs.”

After the passage of the Americans with Disabilities Act (ADA) in July 1990, things did change. However, since the Law was passed thirty years ago, it has failed to live up to its full promise because of its lack of enforcement. Although the ADA was not the first Disability Civil Rights Law, it was the first law to clearly articulate that Ableism – discrimination in favor of Able-bodied people – and the obstacles that society uses to segregate the Abled from the rest of us are the causes of disparate outcomes for People with Disabilities.

The modern Disability experience is bisected by the ADA. Before and after the ADA is our BCE/CE, so profound is its impact. Before the ADA, there werent curb cuts – those little ramps at the corners of city blocks. Before the ADA, every city block was an isle of cement surrounded by an ocean of asphalt. Just getting from one city block to another required me to run my electric scooter off the edge of the curb; The concussion from the impact left a bruise on my chest after only a few blocks. The opposing curb was like the White Cliffs of Dover. I needed to recruit friends and family to lift the front wheels of my electric scooter up on top of the curb and then I needed their help to lift the back wheels. The distance I could travel was dependent on the strength of my friendships. The ADA changed this, and many other things, for the better.

However, for those of Us within the Disability Community, this year it has seemed like things have gotten worse and we have been made more invisible. This is the year when concentration camps and forced sterilizations are happening again. The majority of the victims of police shootings are People with Disabilities, overwhelmingly Disabled People of Color, including the tragic shooting of Walter Wallace, Jr. in West Philadelphia just this week. Researchers have verified that the majority of deaths from COVID-19 have been People with Disabilities and the Elderly. A lot of these deaths were because the Elderly and People with Disabilities are often treated as an afterthought in disaster planning.

When COVID-19 first hit, respected medical professionals floated the idea of taking ventilators from infected People with Disabilities first if they had to manage supply. Unfortunately, for at least one family in Texas, this moved beyond theoretical. During the Summer, over the horrified objections of his wife and children, doctors withdrew COVID-19 treatment for Michael Hickson. The doctor decided that the quality of life of someone with quadriplegia must be so horrible that his life wasnt worth living; No matter what The Victim or his wife thought about the matter.

Ableism works through the tentacles of intolerance that ensnare the souls of our Able-bodied brethren, convincing them that we are less, that our lives arent worth living. The colonizer mindset that besets us with the notion that there is one way to look, one way to feel, one way to live, and one way to love. In 2020 Able-bodied people are using Ableist and outmoded ideas to make social decisions masquerading as medical justification. This year, the result of the invisibility of People with Disabilities is the death of thousands.

People with Disabilities have years of experience as patients and have a needed perspective on the medical system. And it is important to note that Disability is the only minority that anyone can join in a heartbeat, as acknowledged by Dr. Alicia Conill, author of I Never Really Understood Until It Happened to Me.” Fifty percent of Americans will develop a disability at some point in their lives. This is terrifying because it not only means the acquiring of a medical diagnosis; it means not being able to frequent the places you find beautiful, with the people you love, in the roles that give life meaning.

The lack of knowledge about the Disability Experience even reared its ugly head in the Vice-Presidential debate when the moderator brought up the idea of presidential disability. Many Disabled People voiced frustration that the moderator had confused Disability with incapacity. Disability is a proper noun. Disability describes a shared, lived experience. Disability is a robust and vibrant culture, made up of all cultures. Disability doesnt discriminate, but it is more common the more marginalized the subpopulation.

If spaces were designed to be accessible to all, if the public sphere was not studded with spikes, if jobs were designed to adapt to the needs of the worker instead of the other way around, then the present circumstances of your body would no longer need to be the deciding factor. Living with a medical condition is difficult but, for many of Us, society’s limited view of our capabilities and fear of becoming part of our existence is the greatest adversity. Disability is synonymous with adaptability and defiance, not defeat. It is about the intersectionality of the human experience.

The notion of rugged individualism is over. We rely on one another. Our greatest strength is our ability for collaborative problem solving. Disability is the idea that humanity is a jigsaw puzzle. The distinctiveness of each person makes the whole possible. The shining city on the hill is not complete without ramps, closed captioning, and Braille. American Exceptionalism has not reached its potential until everyone has avenues for their aptitudes.

A look at history seen through the eyes of those of us with disabilities, told from our voice

This National Disability Employment Awareness Month is about Visibility. It is about calling attention to our contributions, and our place within the pantheon of humanity. It is to deny our further devaluation. It is about redefining worth, independence, strength, and liberty.

For far too long People with Disabilities have been relegated to the shadows of shame. In modern media disability is often a lazy literary device for villainy and victimhood. This can be seen in the insidious Tiny Tim Narrative. The framework of a plucky optimist who can overcome obstacles if he just tries hard enough has cost lives. Bystanders shouldnt intervene, or they are robbing him of his opportunity to grow. Tiny Tim wants to be an inspiration, and so witnessing his struggle and being inspired by it is giving him the help he wants; or at least thats how the story goes. Its modern incarnate is inspiration porn” – portrayals of People with Disabilities whose characters are built solely to pull at the heart strings of Able-bodied people, or give them a character to whom they can feel superior.

Scriptwriters would be better served writing characters who go about their lives and just so happen to have disabilities. The true next step is the depiction of the lived experience of those of us with Disabilities. Id recommend Sproutflix, which hosts the largest and most diverse collection of films featuring people with intellectual and developmental disabilities on the marketplace. AMC Networks is recognizing National Disability Employment Awareness Month with a collection dedicated to spotlighting and celebrating people living with disabilities. This is one of the few venues where the writing, directing, and acting are all done by Disabled People.

The Visibility Collection will be available to stream free all month long and includes BBC Americas all-new series of short films, CripTales: Sit with Mat as he waits for an audition and recounts the cruelest of all auditions when, as a child, he was tricked so his family would be paid less from a pharmaceutical settlement. Ride with Hamish as his new electric wheelchair opens up new worlds and new sections of his soul. Watch The Shed” as a masterful actor depicts the type of terror that can only come when a trusted caregiver, who knows everything, has access to everything, and is depended on for everything, turns out to be a jealous stalker. This series and the other works offered on this website seek to allow Abled-bodied people to have the opportunity to see us as we are – not boiled down to our base constituents or elevated to inspirational edifice.

Alice Wong furthers this effort in her masterfully curated Disability Visibility Project. This is an incredible collection of narratives from the perspective of those who lived them, the marginalized, not often seen memorialized in the pages of books. This is why Wongs text is so important, and why she is what a literary sentinel looks like.

October is a month to celebrate the accomplishments of People with Disabilities, not as outliers, but to make visible the everyday accomplishments of People with Disabilities today. To once and for all prove our value by showing our worth. To present in stark contrast the actual experiences and contributions of People with Disabilities as opposed to the outmoded notions of what it means to live with a Disability. We do not want to discover how bad it can get, and how many will die if we remain invisible. This year, we can be invisible no more. In this year of existential threat, we are invisible no longer.

Matthew CP Purinton, LCSW is a Staff Therapist at our University City Office. He currently sees clients via online therapy. To set up an appointment, you can reach him at mpurinton@councilforrelationships.org or 215-382-6680 ext. 3135.

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