Thank You, Judy Heumann

 

  Those that know me know that I love to read. I even go as far as creating book lists of authors that I want to read. I follow up by reading all of their work. I usually stick to the mainstream authors such as James Patterson, John Grisham, and Dan Brown, to name a few. I also enjoy biographies and memoirs. Recently, I finished a book titled Being Human by Judith Heumann. This book was not only a good read, but it was relatable.

  Ms. Heumann is a disability advocate who is a disability superstar. Not only does the book document her life within the disability community, but it also highlights key events that took place in the disability rights movement. Ms. Heumann was involved in the sit-in that took over the San Fransisco federal building to get the regulations that give power to section 504 of the Rehabilitation Act of 1973 signed. This law laid the foundation for the Americans with Disabilities Act, signed into law on July 26^th, 1991, by George H.W. Bush. While I was familiar on a surface level with all the events mentioned in the book, I learned much more than expected from Ms. Heumann. She made the book relatable on a personal level.

  Before starting the book, I was aware of Ms. Heumann’s involvement in the Disability Rights movement; I was unaware how much her story parallels my own. Ms. Heumann had the intention to be a teacher. However, unlike me, she pushed her case through the court system. I do not mention this here because I am reliving the past and dreading my decision. Everything happens for a reason. I only bring this up to highlight the similarities between us.

  Reading her book has re-energized my passion for bettering the lives of all disabled people, no matter the degree of disability. While much has changed since the passage of the ADA, one has to question whether or not it is time to become more forceful and stage more effective protests once again to draw attention to the plights of the disability community. Although our lives have significantly improved, there is still work to be done so we can live up to a common disability rights mantra. “Nothing about us without us.”

 

 

Counting My Blessings

 As a writer, you never know where the inspiration for a blog or story will come from. I had the idea for this blog after a conversation with a fellow disability advocate. My colleague was interviewing me for a story about transitioning from using your family to care for your physical needs when you are disabled to using outside caregivers. When the article is finished, I will post the link here.
We got off topic and started talking about our living arrangements at some point in the conversation. It came out that my colleague still lived with her parents in their tiny house. Sometimes it takes a kick in the ass to make you appreciate what you have, even if it isn't exactly what you want. Life still has its ups and downs. Yes, I still have trouble finding help, but my situation is pretty plush. Recently I have been presented with the opportunity to work with Florida Self-Advocacy Central again after nearly three years. I was presented with the opportunity to join a fellowship program. The program lasts for five months, with the option to renew the fellowship in August. As a part of this fellowship, I will be writing more articles for Florida Self-Advocacy Central. I will also be conducting training to help other people with disabilities become powerful voices for change. However, as excellent as the fellowship is, that is not the only reason I am thankful.

While writing for the fellowship, I have developed a great relationship with my uncle Tom. We have always loved each other like family, but now he serves as my primary editor for most of my written work. Our relationship built on love has grown into a much deeper love and respect for each other. He will even be editing this post before it is published. With that being said, this message is for you, Uncle Tom. Thank you for being the wonderful uncle and friend that you are. I am so blessed to have the connection I do with you.

There is one more blessing that I want to address. As I mentioned earlier, my friend still lives with her parents. I, on the other hand, am blessed with my apartment. Yes, I live on the same property as my parents, which can have its drawbacks, but for the most part, I could not have a better setup. Most people who require as much physical assistance to function as I do are forced to live in a group home. As a disability advocate, I am grateful that group homes exist in place of their predecessors' institutions, such as Willowbrook. These facilities were not even fit for prisoners, much less for people with disabilities. I say all that to acknowledge how grateful I am. My parents are going above and beyond for me. They are moving out of their current residence because they are tired of the homeowners association and its over-the-top amounts of rules. I am blessed with the opportunity to go with them. While I do want to live elsewhere, I am grateful for the opportunity to be involved with the planning and building of a new house. As much as I wish to be independent and perhaps live in a different area, I understand that they need to be close by if I encounter issues with my caregivers. Until I had the conversation mentioned above, I still wanted to move out of state. After having the conversation, I finally realized that things are the way they are meant to be. I need to stop living in an imaginary world and accept and start living my perfect and extraordinary life.

Riding at The Back of Societies The Bus, What does it mean to be disabled in America today?

"Give me your tired, your poor, your huddled masses yearning to breathe free, The wretched refuse of your teeming shore.".




People with disabilities now share Rosa Park’s seat at the back of the bus

It is no longer just Rosa Parks fighting for African American rights; now, the fight includes people like Justin Dart, Jr., the founder of the American Association of People with Disabilities.

It takes hubris to equate the struggles undertaken by the African American community in the early 60s with the challenges facing people with disabilities today. The disability rights movement is one of the last significant Civil Rights movement in America that has not gotten mainstream attention. While people with disabilities have the Americans with Disabilities Act, it is only a single piece of legislation. It by itself is only a Band-Aid and does not improve the lives of people with disabilities. It has been nearly thirty years since this ground-breaking piece of legislation, but has much really changed? It took more than one bus boycott for African Americans to see significant change. It is time for the Disability Rights movement to re-engage, re-energize, and mobilize itself to effect greater change for people with disabilities.

There are four critical areas in which the Disability Rights movement parallels the struggles of African Americans in the civil rights arena: The economy, the language used to describe the group, their social status within society, and in terms of political power.





It may be controversial to say that people with disabilities now share a literal seat in the back of the bus called American society.

First, it is crucial to address the economic standing of people with disabilities compared to their peers. Currently, if an individual has a severe disability that requires assistance with physical activities, they have to fall within two categories. A person either has to be extremely fortunate economically, making over $100,000 a year to pay for assistance. Or they have to remain at or below the poverty line, which in turn allows them to receive government assistance. For example, I have a Masters Degree in Education and a Bachelor's Degree in Theater as well as in History. I intended to pursue my teacher’s certification. However, I was denied the opportunity to teach and complete that portion of the program because of preconceived notions the school held regarding what I could. They did not allow me to prove them right or wrong. They just made a general assumption about me. Had I been allowed to prove myself, I would have been in a Catch 22 situation. A teacher does not make enough to support oneself financially when external limitations such as disability are involved. If the economic limitations are not clear, one can use the following example to drive home this point. Paul K. Longmore is a powerful disability advocate who has a Ph.D. in History (?? CONFIRM); however, he is limited due to his disability. Mr. Longmore completed his Ph.D. but was unable to receive royalties from his work due to the fact that he would have lost his much-needed benefits. In protest, he was inclined to burn all copies of his manuscript. I am in a similar situation. If someone like myself or Mr. Longmore is capable and has the proper education and skills to contribute to society, they should not be prevented from doing so for fear of losing their vital community supports. It is essential to underscore that under the current system, people with disabilities are forced to choose to remain low or hope for a giant lottery win to exist on equal ground in American society. The economic barriers are not the only barriers that push disabled people to the back of the bus.



If one can look past the economic barriers that people with disabilities face, they are confronted immediately with several others. For example, the language we use to describe disability or how we talk to people with disabilities, in general, can be patronizing. As a requirement of my Master’s program, I needed to take two classes on how to teach students with disabilities, except they did not use the word “disabilities.” I was required to take courses on how to teach students with “exceptionalities.” Exceptionalities is the latest whitewashed term to describe persons with disabilities. Exceptional is someone who breaks the 4-minute mile, not someone who brushed their teeth. I find it interesting that society has become so scared of disability that we use sanitized language to describe it.

Along with sanitized language, society also sanitizes disabilities in other ways. The late comedian Stella Young describes it perfectly when she coined the term “inspiration porn.” The term is defined as giving people with disabilities a gold star for everyday activities such as getting in and out of bed, putting shoes on, or even eating without messing. The disability community can be harshest by insisting on limiting language. For example, I make fun of myself all the time by calling myself T-Rex due to my hand contractures. Still, people within the disability community think nothing of criticizing me for the way I deal with my disability. The self-deprecating language I use does not dehumanize me; it degrades the disability's effect on my life outlook. Others can’t tell me how to describe my disability.

There may be those who scoff at my comparison between the Disability Rights Movement and African Americans' struggle. No one is arguing that many other groups haven’t had to struggle for equal footing. To a degree, circumstances have improved for these groups. My argument is that people with disabilities now share that seat at the back of the bus.

Another point worth mentioning is that persons with disabilities are one of sympathy, not citizenship. As we approach the end of 2019, a clear example of my point can be found in a recent story that I saw on Facebook. It is now such big news when a major cable network, CBS, signs a pledge to audition disabled actors to get positive press for it. Yes, it is a good thing, but my question is, “Why the hell is disability playing a role in one’s decision to hire an actor/actress.” The whole point of acting is to play challenging roles and explore what it means to be human. At what point will we realize that disability is not something to be shunned. Instead, it is just a part of the human condition.

In the US, who you know and who you associate with is crucial to social development, perhaps even more so when you are a disabled person. Social isolation is a difficulty. In school, a child’s social group tends to revolve around their classroom cliques. For a child who spent his or her school years removed from the “mainstream” classroom, their peer and social groups were limited to the other students in their special education classes. After high school, for those students who continued their education at colleges or universities, their peer and social groups are limited to those other students who choose to include them in social activities. Having a friendship with a lab partner does not always translate to invitations to parties. After school has ended, social groups tend to revolve around work colleagues and events. For a person with a disability without employment, this is the end of their social life. Other social relationships rarely develop other than those between the disabled person and their caregivers. Persons with disabilities end up unintentionally segregated due to society’s inability to look past differences. At what point will it be acceptable to “mix groups,” or will we forever be hidden away from view?

A final area that mirrors African Americans' plight can be found if one looks to the political arena. No one is arguing that African American’s opinions and rights haven’t been infringed upon. However, disabled people also have had their voting rights tampered with through a wide variety of methods, even though people with disabilities currently make up a large portion of the electorate. Their vote is sometimes dismissed through voter ID requirements and inaccessible polling places. Don’t believe me? If every person with a disability had voted in the 2016 presidential election, there would have been 2 million more votes cast. I am not saying that the results in the election would have changed, but I am saying that the candidates missed out on a huge opportunity to talk with an underrepresented segment of society. The disability vote can decide the 2020 election. That is if anybody pays attention to it. Thanks to groups like the American Association of People with Disabilities and their voter engagement program. Perhaps this is a sign of the long-awaited change that is beginning throughout society.



I do not expect this essay to change the hearts and minds of everyone overnight. My only intentions are to highlight the work that still needs to be done and start a conversation. Just because “We” have The Americans with Disabilities Act, persons with disabilities should not grow complacent, and America, as a whole, should strive for the better overall treatment of all of its fellow citizens. Sometimes, although this country is excellent, it settles for patting itself on the back for minimal effort rather than putting in the hard work needed to live up to the words on the Statue of Liberty.

A New Way Of Thinking About AID Care

I recently celebrated my 34^th birthday 34 is not a significant  number, but it means you're closer to midlife crisis mode, just kidding, at least I hope so. My birthday got me thinking over the last month, or so I've had a new zest for life. I'm more focused on bettering myself and life. I currently serve as a communications team member for Access the vote Florida, which I helped found along with my work for ATVFL. I've been blogging more, and I'm trying to increase my internet presence. All that said, I had a conversation recently with a friend and caregiver about what life was like before I moved to Florida.

My friend and I randomly got on the topic of what he's doing with his life; he is currently going to school to become an EMT. As the conversation progressed, we fell on the topic of my AID care. Before moving to Florida, I lived in north western Pennsylvania. I have a love hate relationship with Pennsylvania. I loved it because it gave me freedom from my parents but hated it because the area of the state I was in was too fucking cold. I left Pennsylvania shortly after my dad had a stroke; you would think I would be happy being close to family, and on the outside, I am; however I still have a free spirit and long for adventure.

It has been eight years since my dad's stroke, he is not back to 100%, and I do not think he will ever be, but he's doing 100x better (love you, dad). Some of you reading this may ask now that he is doing better, why don't you move out of Florida? There is no simple answer to that question; indeed, quite the opposite, I enjoy being close to my family, but sometimes I wonder if we're too close physically, I mean. Secondly, if I wanted to change my physical location, there are several factors id must take into consideration. The most obvious is if my dad's health declined; however, my main concern is my care.

Just as a refresher for my returning readers and a bit of information for my new ones, I have what is known as spastic quadriplegic cerebral palsy. For the most part, I am lucky to have the type of cp I do. My cp doesn't impact my mental capabilities; instead, I believe it enhances them to compensate for my lack of ability. Due to my physical limitations, I require a large amount of physical help. I am even getting help writing this blog. I could have used my voice-activated software, but while it's effective, sometimes it is easier to get others' help. Because my voice is often unpredictable, it will be loud and strong, and the next minute people around me cannot understand me because I am whispering. Individuals like myself need a large amount of aid and have limited options. They can live in a group or nursing home or use what is known if Florida is a home and community-based waiver (the waivers name varies by state). If I did not use the waiver, my family would have to pay out of pocket, but the waiver is restrictive.

When someone uses this waiver, they must follow strict guidelines, including guidelines about their income and the place they can live. For example, in Florida, where I live, there are two versions of the waiver, the agency model and the CDC plus model. The agency model means you hire an agency to send aids to your house while the CDC model eliminates the agency and allows you, the customer, to be the boss. My waiver services will travel with me anywhere in Florida; however, if I had the opportunity to move back to the Washington DC area to pursue my advocacy on a national level, I would have to wait six months to a year in order to be eligible. Another hurdle I would have to overcome in Maryland is the number of hours I would get compared to Florida. The allotment of Medicaid funds is like a salary; you only have so much every year to spend on a caregiver, and Medicaid always chooses the cheapest option. My allotment would change depending on the state I went to.

Now weigh all the facts and how the system runs currently, I ask this question the aid care system hasn't evolved very much over the years. Is it not time to solve a 21^st-century problem with a 21^st-century solution? I propose the following solution since Medicaid is available in all 50 states, would it not be possible to federalize their program and treat it as health insurance? Health insurance has no borders; why should aid care?

Happy Birthday ADA Thirty Years Of Advocacy & Activism

 

 

 Birthday ADA Thirty Years Of Advocacy & Activism, Where Are We Now?

I have not written for this blog in nearly three years. But in three years, it's funny how things come full circle. As many of you know, I started this blog as a sounding board for the struggles I was encountering during grad school; however, I quickly realized this blog was turning into something more significant and more critical. It was turning into my commentary on disability issues and living with a disability in general. I have covered everything from how people with disabilities are viewed as infantile by individual members of the able body community to the funny side of being disabled. As the ADA turned 30 Sunday, I felt it was time to reflect on my life and the world as a whole.

In the 30 years since its passage, my life had changed a great deal when it was first signed. I was four years old, but now I am a college graduate with a dark sense of humor who advocates for people with disabilities. I have my days where I get discouraged like everyone else, but I'm a positive voice for change for the most part. I am blessed to have grown up in a post ADA world. The opportunities I have would not be possible without the ADA. I am currently serving as co-founder and a communications team member at access to the vote Florida. A voting coalition that seeks to strengthen the power of voters with disabilities. I'm also pursuing a freelance writing career. It was not too long ago that someone who is as severely limited as me would not be in his own house but an institution. I just yesterday complained about the poor hand. I was dealt with about my current location, but looking back on it, I see it as petty and childish. While my life is not going exactly as planned, I realize I am blessed to be where I am; it could be a lot worse. Even though they were divided right now, this country is still the best place to be disabled.

In closing, I know there is a lot of work yet to be done. We all have a role to play in furthering the voice and power of people with disabilities. Just because we have the ADA doesn't mean we should get complacent. A common slogan used throughout the movement is "nothing about us without us." At the same time, this is a powerful slogan. I think it's a reminder that we still have a lot to do to fulfill our founding fathers' promise when they said, "All men are created equal."

"Son, not "sun"

So, on Monday, I started writing again for this blog. I’m trying to get my shit together. One would think by the time someone is 31; they would have figured things out. I have a great support system and parents who love me beyond measure, yet something is still lacking in my life. I did not know what this was until this morning. As I’ve stated in the other blogs, I attempt to replay conversations in my head after the fact. I was replaying one such conversation from a few months ago this morning when I realized it fit into exactly what’s going on in my life right now. On the surface, it seems as if everything is going perfectly for me. I am being considered for my first job, and from what I’m told, I’m high on the list of potential candidates. I didn’t mess up the actual interview even though I was nervous as all get out. I just had a visit with one of my best friends. Life couldn’t be sweeter, right? Well, I am sad to report that this is not the case. I never thought I’d use this blog as a therapy outlet, but a conversation that occurred recently with my mother and me, along with the dialogue that a former aide and I had several months ago, made me realize that perhaps I’m dealing with an issue that needs to be discussed on a larger scale about maturity and disability



I’ve always complained about how the able-bodied community coddles people with disabilities throughout my many pieces on this blog. While this may be true to no small extent society-wide, it isn’t true in all cases. Many people with disabilities are forced to face the hard realities of unloving and uncaring families. I am not coddled either, for the most part. However, I fall in between. I am nothing less than adored by my parents and support system, but I often fail to see it or take it for granted. I wonder if this occurs throughout the disability community. Usually, we get so wrapped up in how people treat us; we forget how to treat people ourselves. It is not my attempt to attribute all my wrongdoings to my disability, no. It is merely an acknowledgment of a flaw that I have to work on. I have lost friends and damaged relationships with people I love due to my self-centered view of the world. I cannot go back and change these actions, and the old saying that actions speak louder than words is true. However, this is my attempt to start fresh. To some readers, it may seem surprising that I am admitting that my life is not perfect. I have the chance to live a pretty awesome experience. If it isn’t perfect, it isn’t anyone’s fault but mine.

I use myself as an example to make this point; people with disabilities often view the world as victims. Maybe we are victims but victims of ourselves. The only ones we can control are ourselves. However, not to be too cliché, our actions do have consequences. Our world can be awesome or horrible or a mixture of both. It is up to us to choose the path we roll down.

What's so "special"?

My Random Rantings for the Night

I haven't written in a while on the Voiceless minority. I've been busy dealing with some medical issues and capturing and taking advantage of several opportunities that have come my way. More on that later –



However, the point of this blog is to get on my soapbox. Before I do so, I must say that this blog is a straight opinion piece, and it comes from the point of me being extra picky when it comes to semantics.



The other night I was watching one of my TV shows – the WWE- when they announced a partnership with the "Special" Olympics. When I first heard this, I went all noble, and my mind took over. I said, "Oh, here we go again, the mainstream media and the able-bodied community using the disabled as 'inspiration porn.'" For those who don't know what that is, the term inspiration porn was coined by disabled activists and comedienne Stella Young. It is the idea that the able-bodied community uses their disabled counterparts' achievements to inspire them. They use simple achievements, such as getting out of bed, and they see it as extraordinary. When I first heard the announcement of the partnership with the "Special" Olympics, I made the connection between that and inspiration porn immediately, and part of me believes this idea to have merit. It needs to be further explored, which I hope to do throughout this blog.



Once I had calmed down, I reflected on the "Special" Olympics concept as a whole. The overall idea is a good one. It gives people with developmental and intellectual disabilities an outlet for an athletic competition which they may not get otherwise. My issue with the whole concept is again, I'm picky on semantics, but why do we have to call it "special"? If we look at the "regular" Olympics, the emphasis is on athletic achievement and bringing the world together, to forget all our problems for a little while. To recognize a segment of the disabled community's accomplishments, we have the Paralympic games after the Olympics. This is an excellent concept as it recognizes disabled athletes for their physical achievements, and at no point are they referred to as "special." Instead, their achievements are looked at from an athletic standpoint despite their obstacles.

The Paralympics do not get as much attention as the regular Olympics, but they still draw considerable attention. My problem is with the media's treatment of the "Special" Olympics. As I said before in this blog, the concept is a great one as it allows people with intellectual and developmental disabilities such as Cerebral Palsy and Down Syndrome to participate in athletic events. The problem comes when the media capitalizes on the concept in the wrong way. Rather than treating these athletes like their able-bodied counterparts, in this writer's opinion, most of the able-bodied community infantilize an entire population through the way these games are presented. I am not saying this from the point of no experience. I participated in these games when I was younger. In my experience, every athlete gets a medal; to illustrate the absurdity of this point, I got an award for my driving ability. Anyone who knows me knows my uncanny ability to end up in the bushes or hitting a wall when I steer myself. The medal I received was for going correctly through an obstacle course. My opponent, a good friend of mine at the time, ended behind me but received the same medal I did. It has been a long time since I competed in the "Special" Olympics, and hopefully, this practice has ended. I am skeptical. If it has not, it is a further illustration of my point that the "Special" Olympics are not designed for athletic competition. Instead, they are intended to pat participants on the head and say, good job, buddy. These participation trophies do nothing to spark a healthy interest in competition and might do just the opposite. If anyone reading this still participates in the "Special" Olympics and can prove me wrong, I gladly welcome the correction and admit my error on this blog in a future post.

Even if this is not the case, I assert that organizations like the WWE, who greatly influence the media, use their platform to showcase individuals with developmental and intellectual disabilities inappropriately. Glorifying these individuals simply because they have a disability goes back to the idea of inspiration porn. On this particular episode of WWE, they highlighted one athlete in particular who was a participant in speed skating. The only problem with the way they highlighted him is that the athlete himself did not speak throughout most of the piece. Instead, members of his family and his coaches spoke for him. As a readers note, I have a family who participates in the "Special" Olympics to this day. My cousin does get great enjoyment out of the games, but our family does not treat her as extra special. They look at what she has accomplished. For them, it isn't about the medal; it is about the fun she had.

In closing, the "Special" Olympics concept is a great one, but I raise this question and point – why are the people who participate "special" just because they participate?