The Fight Continues

In my previous post, The Disabled States of America, I chronicled the rise and major events of the Disability Rights Movement in the U.S., this week I would like to explore the continuing battle for disabled equality. As we celebrate a quarter-century with the Americans with Disabilities Act, it is important to realize that the struggle is far from over. The goal of fairness and freedom is a continuum of progress build upon itself, forever reaching towards the future. Disabled people in America and around the world still face substantial hardship due to societal inequities and perceptions. As an activist and disabled person myself, I feel that it is important for everyone to be aware of the current challenges.

Disabled activist Frank Bowe, known as the Father of Section 504, once wrote, "America handicaps disabled people. And because that is true, we are handicapping America itself.” The limitations placed on disabled individuals by our culture, not only deny basic rights but also hinder the advancement of our entire society. With around 34 million people in the United States with what is considered a “functional limitation”, it is impossible to ignore the issues associated with one of the largest minorities in this country. Many of those with mental, physical, visible and invisible impairments continue to struggle with lack of accommodation, difficulty getting funding and assistive equipment, poverty, damaging stereotypes, abuse and poor representation. I strongly believe that as a nation and as a global community we need to take a hard look at the treatment of disabled people.

As I mentioned, a major concern for many disabled individuals is poverty, with disability being both a cause and result of being poor. Currently in the U.S., physically and mentally impaired adults find themselves twice as likely to be living below the poverty line even with government assistance. A fairly recent Huffington Post article (click to read) describes this relationship between disability and poverty as well as a few companies working to break down these barriers. Obviously, not all disabled people are able to work and nor does a person need to work to have value in life, but those who can and desire to work face overwhelming odds in the workforce. The ADA may have helped to legally limit workplace discrimination, however, it is still mainly up to employer to decide what is considered “reasonable accommodation” and some organizations remain legally allowed to pay far below the federal minimum wage. The prospect of economic independence for disabled individuals able to work is still very low despite advances in accessibility and assistive technology. 

Another considerable obstacle when it comes to being disabled in the U.S. is the structure of the medical equipment industry. For those who rely on assistive technology, the battle for essential mobility, communication and health related devices can be a lifetime struggle. My family and I have experienced these challenges firsthand, each step of the process as complex and tedious as the last. My blog post from last year, A Work In Progress, discusses some of the challenges of getting a power-wheelchair. Navigating the channels of doctors, insurance companies, service providers and the government is a harrowing task for those familiar with the system and a complete nightmare for the inexperienced. The resources that disabled rights activists fought so hard for do exist but no one teaches you how to be a disabled person. 

To me, the biggest problem that remains is inaccessibility, the barriers both physically and societally. Accommodation is seen as a luxury and even a burden, our identities reduced to either pity or inspiration, entire systems stacked against us, our lives seen as inherently broken. Disabled people live in a society that was not created with us in mind, a world that feels like it’s simply not meant for us. There may have been victories won, laws passed and outcomes altered but progress must continue within our culture's consciousness as well as in its actions. Disabled activists have shown me what can be done, my own life and the lives of others have shown me what must be done and it is up to all of us what will be done.

The Disabled States of America

History is made by those who challenge the status quo, those who seek change within and far beyond their own lives. Movements for equality are born from the devoted few making the voices of the many singular. When a marginalized group speaks up in the name of freedom and justice it is often an act of necessity; it is not simply that they can be heard, it is that they must be heard. When most think about campaigns of social justice the images that generally come to mind are that of the African-American Civil Rights Movement, Woman’s suffrage or LGBTQ rights, however, one of the more overlooked but equally as important battles is the American Disability Rights Movement.

Throughout history disabled people have largely be excluded from mainstream society. People like myself in the past faced mass institutionalization, abuse, neglect and even death. Progress towards better treatment was painfully slow despite advances in technology and culture, even after the U.S. was lead by a disabled president, Franklin D. Roosevelt for 12 years. Prior to the Disability Rights Movement, being disabled was widely regarded as a purely medical issue and not a matter of social equality. One of the first major concepts presented by disabled rights activists was that accommodation and inclusion were not simply acts of charity but instead basic human rights. 

It is no coincidence that the push for disabled rights came at the heels of the Civil Rights Act of 1964 and the powerful efforts of black activists such as Martin Luther King, Jr., Rosa Parks and Malcolm X. Many disabled individuals felt that the Civil Rights bill, while a major victory on the road to equality, failed to protect against discrimination based on disability. Much like the fight for racial justice, disabled activism set out to change both perception as well as legislation. As Margaret Mead once wrote, "Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has.” This pivotal campaign for the fair treatment of disabled Americans certainly echoes Mead’s sentiment.

Early on, a crucial milestone of the larger disabled movement was the Independent Living Movement in the 1960’s, where activists such as Ed Roberts from California advocated for equal living, educational and work opportunities for disabled persons. In turn, it began to shift public opinion leading to the first federal legislation. The Architectural Barriers Act of 1968 was passed to address the barriers that physically disabled people faced within society. 

Another major turning point was the 1973 Rehabilitation Act, which was further expanded in 1977 due to widespread direct-action protesting lead by people like Frank Bowe and Judith Heumann (currently Special Advisor for International Disability Rights to President Barack Obama). The Rehabilitation Act and specifically it's section 504 provision prevented any organization receiving government funding to discriminate against qualified disabled individuals. 

However, the most important event to date in the history of disabled rights in the U.S. did not occur until 1990, when the Americans with Disabilities Act (ADA) was passed. This sweeping bill was imposed by congress and later signed into law by President George H.W. Bush twenty-five years ago this past July. The ADA, while certainly not perfect, is intended to end discrimination towards a wide array of impairments and illnesses. The groundbreaking law was made possible by a diverse group activists and lawmakers. 

A very notable cross-disability organizer and ADA advocate was Fred Fay, who was able to remotely unite and manage the cause quite literally flat on his back. Dr. Fay was paralyzed at the age of 16 and due to a spinal cyst spent the last 25 years of his life in a laying position, he was a pioneer of disabled rights his entire career able to bring together multiple disability groups under the common theme of stigma and oppression. He once said, “Disability is equal opportunity, anyone can qualify at any moment.’’

The brave men and women of the Disability Movement devoted their lives to the betterment of disabled people everywhere, I owe a personal debt of gratitude to the work of these amazing people. So many things I am able to do with my life today are the direct result of this powerful social justice movement. I am inspired to continue the fight for a better tomorrow each time I learn about the efforts of civil rights activists, they are living proof that our voice matters.

Unwanted Attention

Being different can often be an exercise in self-acceptance, a battle of confidence versus perception. Loving yourself in a world that views you as inherently other often takes a great deal of strength. The ability to go out in public without feeling like a spectacle is a luxury some people take for granted. For many visibly disabled people, one of the biggest lost freedoms is being anonymous, going unnoticed. Many times, blending in is simply not an option.

Throughout my own experience of being disabled in a visually obvious way, I have had my fair share of uncomfortable situations. Just leaving the house can be quite a test of patience from time to time. I believe our culture has certainly become more understanding and accepting but there is still a long way to go. When my brother and I go out in the community it is always a bit of a gamble when it comes to unwanted attention. Odd comments and awkward gazes have a way of following us wherever we go.

Personally, I am fully aware of the reality that my appearance is a little different from most and I do generally give people the benefit of the doubt. I try to be as tolerant as possible, however, this constant feeling of otherness does have an effect on self-esteem. I find that just being stared at can fill me with a bit of uneasiness, it’s something I have to consciously ignore. It is important to note though, that the majority of odd looks we receive often times come from small children which I am quite understanding of. The truly troubling instances come from full grown adults blatantly starting at us, as if we were gorillas at a zoo. 

Most of the adult gawkers tend to stay behind the proverbial glass but, once in a while, some people are bold enough to make a comment or ask a question. Again, I usually attempt to be as polite and accepting as possible, after all, genuine curiosity is only natural. What is difficult about these encounters is the way people choose to go about approaching us. Very rarely will strangers address my brother and I directly, typically they will only speak to the nearest abled person with us, as if we were not even there. Each time this happens I am left feeling a bit self-conscious, frustrated.

These acts of ignorance, while many times well-meaning, can be isolating and upsetting when you just want to live your life. To me, these feeling are more limiting than anything my body could cause and they make that said body much harder to love. As a person who likes to look at the bigger picture, I believe the root cause of how disabled people are treated truly comes from a lack of knowledge. I am a strong advocate of better disabled representation precisely for this reason. I hope for a future where the full, brilliant diversity of humanity is recognized and embraced, where all people can move freely without feeling different.