Category Archives: Man Myth Mike Re-post

The Perks Of Being A Wheelchair­ User (Re-post)

I have posted this piece on a few different sites but it is one of my favorite things I have written.


 

Since the age of ten I have used a power wheelchair, a mobility device seen by much of the walking world as rolling pity. A piece of equipment, often stigmatized by society, has allowed me to live my life how I choose. One of the most important lessons I have ever learned,is that my wheels are a positive part of my life, that they represent ability. Living with Duchenne Muscular Dystrophy, a progressive muscle wasting disorder, has shown me the freedom and importance of assistive technology.
Coming to this understanding however, was not always easy. Early on, I fought the idea of needing a chair, in fact, I insisted on walking a year longer than could even be explained medically. Transitioning into a wheelchair seemed like giving up to me at first; in my mind it felt like losing a piece of myself. Looking back I realize that I was ignorant, prejudice even. I had to reject my own internalized ableism and respect my body’s needs.

The Perks of Being a Wheelchair-User

As a culture we tend to still look at wheelchair users as inherently broken, deserving of our utmost sympathy. This deep-­seated notion that all mobility impaired individual’s lives are tragic, made me resent my own existence. Those who regarded my circumstance with abject sadness generally meant well but created a distinct feeling of otherness for me—I wasn’t just a child, I was a tragedy. Feeling sorry for those who are disabled has a very real, negative impact on our self worth. There is a difference between respect and pity when dealing with people who are simply different physically.

One of the biggest factors that helped me get through the early portion of my diagnosis however, was the acceptance of my peers. I remember when I first started using a manual wheelchair for longer distances at school, all of my classmates were so receptive and eager to help. After making them take a road course with plastic cones and passing out laminated “driver’s license”, I eventually allowed a few of my closest friends to push me around the halls. My friends saw me as the same person, no matter what I was going through or how I got around. Often times, children are the most understanding people there are.
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I truly started to feel more comfortable when I received my first power wheelchair. As I began to learn the controls of my brand­-new, shining blue Jazzy 1120, some of my insecurities began to fade. My world seemed so much brighter when I realized I could now get around fast, very fast. Being able to independently drive myself at breakneck speeds with the wind in my face, made the end of my walking days feel more like a relief. When walking became impossible, I was not “confined” to a wheelchair, I was actually freed by it. Another person who has truly supported on me on this wheeled journey, is my brother. Sharing the same diagnosis, he has always been there to relate to, he has also changed my perspective. I feel like in many ways, we have helped each other to adapt to our lives. We have learned from one another how to accept and understand ourselves. There is never any pity between us, we are just regular siblings. And… despite popular myth, we do not, in fact, drag­-race.

For the first few years, I was a bit of a reckless driver to be honest, crashing into more than a few walls. My father loves to tell to a particularly humorous story from when I was in junior high school. One day he was picking me up from school for a doctor’s appointment. As he was signing me out of the office he overheard the principle grumbling to the secretary how the janitor had put a large hole in the wall with the floor cleaning machine. When my dad was hooking up my wheelchair in the van, he noticed a fine dusting of sheet­rock on one of my tires where I had accidentally smashed into a wall, not the janitor. I was both a bit embarrassed and amused with the whole situation at the time.

I went everywhere as a rebellious teenager, the only limitation practically was the curfew set by my parents which I broke regularly. Every day was a new adventure for my friends and I in the neighborhood, during those long awaited summer months of freedom. I wasnotorious for tracking all nature of filth onto the carpets of my home, from freshly cut grass to melted road­tar and everything in­between. On more than a few occasions, to theexasperation of my parents, I found my chair completely caked with mud. The word that most vividly comes to mind with this part of my youth is fearless, I was a wild kid who just happened to use a wheelchair.

Scan_Pic0027Daredevil driving aside, my wheelchair has given me so many opportunities: I raced around the playground in elementary school, I rolled myself to junior high, I sped through the halls in high­ school and now I zip through the Make­-A­-Wish Central New York offices where I volunteer. I have visited new cities, gone to movies, parties, restaurants, concerts and countless other places and activities. The very fact that I can move myself around each day, makes me so grateful for this wonderful tool. I have been able to live my life because of those wheels underneath me.

Despite all the great times I distanced my chair from my identity for many years, I did not want it to define me in any way. At first I saw my impairments as a solely negative aspect of my life, my wheelchair just an obstacle to be overlooked. These days though, my thoughts have shifted somewhat and I now realize that I do not want the fact that I use a wheelchair to be ignored, but rather have it embraced as part of my unique identity. It may be true that my chair may not define all of who I am but it is a major part my life that I am certainly not ashamed of.

I have learned so much over these past thirteen years and I continue to learn every single day. I have come to accept myself, to accept others and to speak out against the oppression of disabled people everywhere—my eyes have been opened. That is why I am so passionate about the accessibility of our society and the perception of all wheelchair users in our culture. I hope that with my words and with my life I have changed a few minds and enlightened a few people on the real life of a man in a wheelchair.

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Not Your Prop: Ableism In Celebrity Culture

Also posted on my Man, Myth, Mike blog.

One of the most puzzling aspects of American life in the 21 st century is our outright obsession with all things celebrity related, the odd worship of strangers we presume to know. This bizarre cult of personality that our society supports, mostly remains a sort of benign noise constantly in the background for those uninterested but every once in a while it crosses a serious line. The latest major celebrity faux pas, not related to The Donald, is Kylie Jenner’s blatantly offensive photo-shoot for Interview magazine that used a wheelchair as metaphoric prop. This act of painfully obvious ignorance, while terrible unto itself represents a larger problem in the relationship between disability and celebrity culture.

 

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This is not ok…

When Kylie Jenner, a celebrity that requires a flowchart to trace the origins of her fame, donned her rather kinky outfit and sat in a blisteringly tacky manual wheelchair, it sent a clear message of how the industry views the disabled community. More shocking still, the supposedly “artistic” justifications behind this blunder was that it represented the limiting nature of fame. Not only does this turn an essential mobility device, that actually grants freedom, as a strange fetishized accessory but it presents disabled people in an extremely problematic light. Disability is not a metaphor to be used at will, disabled individuals are not some novelty to be imitated for shock value.

Unfortunately, Miss Jenner’s stunt that somehow no one thought was wrong before it went to print, is part of a much larger issue. Across the entertainment industry disabled people are largely excluded; disabled actors and models can get very little work, meanwhile, abled actors are cast in disabled roles and abled models are seen as the default option. The fact that Kylie’s photo-shoot even took place shows just how poorly this industry as well as the general population understands what it means to be disabled. I strongly believe there needs to be a major shift in the public narrative surrounding disability.

Fellow disabled blogger Karin Hitselberger’s now viral post, Why We Need to Talk About Kylie Jenner, perfectly sums up the importance of this discussion. As Karin puts it, “We need to talk about Kylie Jenner because this is not really about her. It is about how disability can be considered cool when used as a prop, but so often the lives of actually disabled people are seen as a terrible fate.” The disabled community’s overwhelming backlash to this celebrity blunder has sparked an important dialogue that I truly think everyone should pay attention to. The online response, in the form of blogs and recreated photos with women who are actual wheelchair users, is both empowering and enlightening.

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Blogger Erin Tatum(left) and You-Tuber Annie Segarra(right).

The Kylie Jenner photo fiasco is certainly troubling, however, it does present a unique learning opportunity for the public. Anytime there is a situation in which a particular minority group is offended by something in the popular media, the phrase “Political Correctness” tends to come up at some point but I disagree with that judgement. I believe when a specific group speaks up it is a chance to better understand those with different lived experiences, in this case disabled individuals. As a disabled person myself, I hope that perceptions will continue change and that our society will begin to see the beauty and complexity of true disability.

The Fight Continues (Re-post)

This post was originally shared on my Man, Myth, Mike blog.


In my recent post, The Disabled States of America, I chronicled the rise and major events of the Disability Rights Movement in the US, in this post 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 US, 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 US 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.
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The Disabled States of America (Re-post)

This post was originally shared on my Man, Myth, Mike blog.


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.

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