The Acceptance Problem: It’s Yours, Not Mine

Okay, so usually I don’t write two in a day, but something has been on my mind lately, and the blog I posted earlier wasn’t an original piece of writing. Instead, it was forwarding an inspirational story. So here’s my daily food for thought.
       I warn you that this blog may unsettle some, and it may make you uncomfortable. The un-comfortableness will come from the overuse of swear words or a sexual conversation. It might come from looking at “ourselves” (society in general) in the near. Some of you may not like what you see if you are honest with yourself. 
       I am two and a half weeks away from finishing my Master’s Degree at my school in  Northwestern, Pennsylvania. As I complete this round of my academic work, I am forced to reflect. For the last nineteen years of my life, give or take a semester or two, I have been on the “right path.” We all are required in the end states to enroll in 12 years of compulsory education. After that, different paths can emerge depending on the individual. My approach has been full of curves and wrong turns and such.
       Now some of you may say, “But you’ve told us before you have two Bachelor’s degrees and just said you’re getting your Master’s Degree! What more could you want?” And to be honest, I reflected on this question for several weeks now. I even talked to varying sources, and many of them have told me this, “You are at crisscross roads in your life because you didn’t accept your disability sooner and set your expectations reasonably.” To them, I say it is not that I have the acceptance problem. It is you. “You,” in this case, being social. Even my parents and my shrink (who I occasionally go to) maintain my sanity have remarked that perhaps a little bit of my problem is accepting my disability. 
       Is my problem accepting my disability, or instead is it accepting what society thinks I should be? Limited to or capable of because of my disability. I believe it is the latter, and I will say this straight out. You’re damn, right! I don’t accept limitations put on me by anyone except myself. If that means I have an acceptance problem, then I guess I do. 
       Last Christmas, I asked for a book on the history of the disability rights movement entitled “What We Have Done: An Oral History of the Disability Rights Movement.” I have not been able to steadily read that book due to my Master’s Program requirements, but tonight when I read Chapter 3: Discrimination, I realized not much has changed from the ’50s to today. Some of you may say, but we have the ADA! Society is much more accepting of disability! To that, I must sarcastically laugh. Yes, the ADA has removed the barriers physically to many of the obstacles that face the disabled community. What it has not done is to remove the societal stigmas that come with disability. For example, there was a story in the third chapter of the book about Johnnie Lacy, a disabled individual who wanted to be a teacher, very much like myself. Lacy was systemically persuaded not to be by the same institution, allowing her to take special education classes. When I read this story, I couldn’t help by seeing myself.         
       Yes, I will have three degrees in about two-and-a-half weeks. Still, the route a lot of my college education (especially recently), I have been persuaded or “recommended” not to pursue the paths I follow. The problem is that we fight, and we fight for so long because we know we’re capable of doing whatever we put our minds to. Still, eventually, it’s not necessarily that we give up, but we come to a realization when the whole institutional system is against you. And you have no allies except the people that know you personally; there’s not much you can do. Even though my parents and counselors (and even friends) believe that I am perfectly capable of teaching, they do not have any power when it comes to educational institutions.
       Eventually, I just gave in, so I will walk away with a degree that I will not be able to use. Because yet again, this happened. When I expressed this sediment to this and others around me, they remarked that I haven’t accepted my disability and need to be more realistic about my expectations. To them—in this format, I say you might be wrong. Screw that. I am not bitter and am perfectly aware of my limitations. What I do not accept is the lack of opportunity in the greatest country in the world. We have the Americans with Disabilities Act, that “gold standard of disability law,” but it hasn’t done jack shit when it comes to disability and equality. Just because we can get into a building doesn’t mean society wants us there, and that is the next struggle that the disability rights movement will have to undertake. 
       Finally, someone liked the comparison, but as I dive deeper into the disability rights movement and find my voice, I can’t help but compare our struggles to African Americans in the ’60s. They were discriminated against because of some God-given skin pigment, and people like me, whether wheelchair-bound or disabled in some other way. I am discriminated against because society has such a screwed up perception. Not because we are flawed but because the company itself is flawed. It may take to the end of my life and beyond to fix that problem. Right here and now, I dedicate myself to making life better for further generations of disabled Americans and disabled individuals around the world. 

A Little Bit of Hope

         Today's blog is a combination of things. It is partially comprised of an article that I shared on Facebook about an acquaintance I knew in North Carolina. However, the message of the article is more potent than one individual girl. 
         The article below is about Hope Johnson, a 32-year-old with the same type of Cerebral Palsy that I have. She is a shining example of how very few people with disabilities ignore their disability and strive for their full potential. Hope's message is that our obstacles, but what we do to overcome them, shall not define us. Although this particular piece of writing is not entirely my own, I felt it was crucial to share here because it embodies the message of The Voiceless Minority Blog in that one should fear nothing and regret less even if society tells them to worry about the obstacles that they have been given at the start of this journey called life. 
         I thank my friend Angela Swanson for sharing this on Facebook, and everyone should check out Hope's blog. 
         



"Hope is the thing with feathers that perches in the soul And sings the tune without the words And never stops at all."

 

This Emily Dickinson quote headlines the blog of a miraculous Messiah College senior, Hope Johnson, who was born with athetoid cerebral palsy. Cerebral palsy is a physical disability that affects movement, coordination, balance, and posture and is caused by an injury to the brain or by unusual brain development.

 

Because of cerebral palsy's unrelenting grip, Hope, 32, is without the use of her arms, legs, and voice. She "speaks" with her left foot, painstakingly typing out words with only her big toe, on a specially designed keyboard at the base of her adopted computer workstation.

 

Worldwide, 17 million people live with cerebral palsy, and another 350 million are closely connected to a child or adult with CP. It is the most common physical disability in childhood, according to UCP Central Pennsylvania, which is marking its 60-year history of serving children, youth, adults, and seniors not only with CP but with autism, traumatic brain injury, stroke, and other conditions and diagnoses.

"I think what saddens me the most is people's attitude about individuals with disabilities. They assume that you can't." – Hope Johnson

 

Although Hope cannot "speak" in the traditional sense, she has a powerful voice and an inspiring message, which she's eager to share on her blog, aptly entitled "A The journey of Hope."

 

Dickinson's "hope" quotes illuminate and inspires her life.

 

"Her name so fits her," said Lynda Bowen, UCP Marketing and Communications Coordinator, and Hope's supervisor during her two internships at UCP.

 

Hope has stylishly short-cropped hair, expressive eyes, and a ready smile. She goes shoeless so that her polished toe can type out her thoughts. Her writings display an unshakeable belief that she is not disabled, only "differently-abled" and that she will not "become my Cerebral Palsy."

 

She first started college on a North Carolina campus lauded as handicapped accessible. But she soon learned a painful lesson: "Accessibility does not mean acceptance."

 

Now an English major, with a writing emphasis, at Messiah, Hope is proving that physical limits do not restrict the flow of creativity and intellect. She has lived on her own on-campus since 2007, with modifications added by the college to allow her to live independently.

Ann Beasom, her Community Integration Specialist, advocate, and friend, accompanies Hope to class and serves as her "voice" on campus. She does this by sounding out the words Hope types on a simple toeboard in a black binder that resembles a Scrabble game board.

 

Hope is on track to graduate from Messiah in May of 2014. When she does, she will be their first non-ambulatory, nonverbal graduate. It will have taken her ten years to earn that coveted diploma. Will she cry when she gets her certificate? "Of course!" she types without hesitation.

 

Bowen said Hope is destined to draw a standing ovation, especially from an admiring faculty.

 

Samuel Smith, chairman of Messiah College's English department and one of Hope's professors, wrote in a letter of recommendation that "Hope is one of the most inspiring individuals I have encountered in my 20+ year teaching career. A solid work ethic sustained her excellent work in my class.

 

"But perhaps just as important as her abilities and skills, Hope approaches all her work with passionate care," Smith wrote. "She has an integrity of character — a strong self of herself as a moral and responsible self — that all of us can take for inspiration."

 

Hope's long-range career goal is to advocate for people with disabilities and work as a professional writer. She got a taste of what it would be like to realize those goals during her summers as an intern for UCP's Development Department.

 

Hope is among the success stories to be shared as UCP celebrated its 60th anniversary in 2013.

"I try to live my life without limits," Hope says, clearly modeling the organization's motto of "life without limits for people with disabilities." She dazzled everyone around her during her internships with UCP, curating content for their social media, critiquing the literature on CP, and writing original content for their newsletter.

She even developed and launched a notecard fundraiser that has raised $1,500 for the organization that helped her unleash her full potential.

 

Bowen marvels at the fact that Hope's work is virtually error-free.

"Her stuff comes through, and you'd never know what it takes to do this," Bowen said. Content, grammar, and punctuation are all "flawless," providing little proof of the struggle behind the creation.

 

UCP statistics show that the unemployment rate for adults with disabilities is 71 percent, yet the vast majority of these unemployed adults want to work.

 

Hope said her grandparents taught her to type. Although they have both passed away, she is quick to acknowledge the remarkable impact on her life. Tears fill her eyes as she types on the toeboard, "They're looking down on me, smiling."

 

But she does not dwell on the grief.

 

"I think what saddens me the most is people's attitude about individuals with disabilities," she said. "They just assume that you can't."

 

What would she tell those non-believers? "I think I show more than tell."

 

But then she taps out this jewel: "You never know what's inside."

 

Her joys in life include writing, particularly poetry, and spending time at Bethany Beach, Delaware, where she rolls a chair right up to the water's foamy edge. She dreams of traveling to France, Italy, and England someday but knows that accessibility issues will complicate her movements.

 

It is her nature to be "pleasant, polite and upbeat," she said, acknowledging that "Sometimes I overcompensate." One of her biggest challenges, she said, is fatigue. It takes so much effort to type, painstakingly communicating, letter by letter.

 

In one of her most poignant poems, she writes how she is not physically limited in her nighttime dreams. She experiences the miracle of having no physical restriction. "One cannot describe the exhilaration that one feels flying. It is as if the soul is free from any bondage it encounters in life."

 

Yes, her professors have taught her, but she has taught them, too: "Anything is possible if you have an open mind."

 

She has begun work on a memoir, and one of her favorite professors has encouraged her to try to get it published.

 

On her blog, she types, "I hold power to captivate just by the pressure of my toe striking each key, and I thank my audience for putting all of this at my 'feet.'"

 

Power resides in even the smallest of people – and words. Like "hope." 

At a glance

•   WHAT: UCP of Central Pennsylvania celebrates 60 years of service to people of all abilities.

•   WHEN: Reception at 6 p.m. Nov. 21 and dinner at 7.

•   WHERE: West Shore Country Club, 100 Brentwater Road, East Pennsboro Township.

•   INFO: Anyone who has been helped by UCP is encouraged to share their story in words or photographs. Please check the website at www.ucpcentralpa.org for additional details. For more information, call 717-975-0611 or email Janeen Latin at jlatin@ucpcentralpa.org.

       I got the original article from pennlive.com. If you would like to hear more about the UCP, then go to http://www.ucpcentralpa.org/. Leonard Goldenson founded the UCP organization. Leonard Goldenson was a true pioneer in that UCP would be the first "disability to utilize telethons" for fundraising. Goldenson would eventually become the head of the American Broadcasting network ABC. 
       The UCP organization provides various services with 85% of its 750 million dollar budget towards programs ranging from education services to travel expenses, parenting, and family and support. There are more than 100 affiliates of the UCP all over the United States with Canada and Australia. UCP does not provide a one-size-fits-all type of service. It typically tailors its services to its locations and needs. 
       Overall, the UCP and the message of young Hope Johnson reiterate that disability should not define a person, but rather a person should define themselves. Disability should only be a part of that definition. 

Thank You

So this is not going to be like a regular blog of mine. It is just a quick note to thank you for your support with the blog in general, but specifically for any of you have called to support the CRPD. Remember, the second round of hearings is this Tuesday, November 12^th. They can be seen on CSPAN or the Foreign Relations Committee website. However, once these hearings are over, that does not mean the process is over. The issue will not come to a vote for several months, so I ask for your continued support and ask that you continue to call your senators until the American disability community has more to be remembered for than just the ADA. Here’s to hoping we can pass the CRPD within the year. Thank you again. 

CRPD Hearing: Round 1 Aftermath

 Today was the first of two hearings on the Convention for the Rights of Persons with Disabilities conducted by the United States Foreign Relations Committee. The hearing went for approximately two and a half hours. Both sides of the issue were equally given time to present their argument. Senator Robert Menendez of New Jersey did a fine job proceeding over the hearings.
       My the previous blog laid out my position on the treaty as well as the position of approximately twenty-six prominent disabled organizations in the U.S. As I sat and watched the hearings that were broadcast life on C-Span something struck me. Regardless of where one falls in regards to the treaty, the disabled community can only see the hearings as a positive. Not since 1990 has the disabled community’s needs been put front and center. Twenty + years ago this quiet segment of society was given a voice and a great voice that allowed such platforms like this blog to exist.
       Amongst all the debates over how the U.S. was going to be affected by the treaty I kept hearing one theme. The U.S. and the ADA are the gold standards in disability rights. For the first time in a long time, American was acknowledging the positive impact we had made on the world. We might disagree on such issues as how big government should be or even what roles government should play in our lives, but for this one day, we were able to put aside differences and civilly debate an issue. On both sides of the issue, there were bipartisan contingencies. Democrats and Republicans were supporting the treaty as well as forcing their opinion against it. Between all the battling, over whether a United States individual’s right to be homeschooled would be affected I heard one important thing. No one out loud said it but it was still there. The importance of disability and individuals with disabilities, which was not recognized 20 years ago, was again at the forefront of the American political arena today.
       I could get into all the arguments that took place over adding or subtracting political Ruts that would protect America’s laws, but that is not the point of this blog entry.  Although this blog entry is going to be fairly short compared to the other postings I simply wanted to write to express my great thanks to the Foreign Relations Committee for even discussing disability rights on a major stage. I hope that they do pass the treaty because I am a firm believer that the billion people with disabilities worldwide deserve at least the same quality of life that their able-bodied counterparts get, in whichever country they live in.  I understand both sides, but as these supporters said while the hearings closed, “America is a great and powerful nation. We are the best example of disability rights out there. This would be a great way to extend our leadership without negative influence on the international community.” Whether you agree with my opinion or not, one cannot disagree with the point that today and the hearings next week are the beginnings of what can be a great time for disability rights in America and the world.

P.S.: For those who missed the hearings today you can view an archived video session on C-Span’s website or on the Foreign Relations Committee website. You can also keep in mind that the second round of hearings will occur next Tuesday. For those who are not familiar with the Political process these hearings do not signify the United States’ ratification of the treaty rather they are just the first procedural step required to eventually bring the issue of treaty ratification to the floor. 

CRPD

       As the 11-month of the year begins, we also mark the end of a month-long celebration. October was Disability Awareness Month. Disability Awareness Month is designed to acknowledge all forms of disability, everything from emotional and behavioral to mental and physical. My university recently even did an exhibit entitled “Allies for Inclusion: The Ability Exhibit.” This consisted of a variety of stations at which visitors could experience an aspect of being disabled. In October, the events that were held throughout the country demonstrated a great effort in the disability community to bring awareness to an often forgotten minority. However, there is a much greater task at hand.
       Rarely do I call my readers to action, but this time I am asking you to read what follows and use your political voice to make a difference. On November 5^th and 12^th, your voice can be heard. The U.S. Senate Committee on Foreign Relations is holding hearings on whether or not to ratify a treaty for persons with disabilities. The treaty is known as the “Convention on the Rights of Persons with Disabilities,” an international treaty that needs the United States’ support. On December 5^th, 2012, it only fell five votes short of a supermajority known as ratification. As these Senate hearings approach, I urge you to not only email your Senators but also place a phone call to their offices. To re-affirm your support for people with disabilities. 
       Why I should support the CRPD:

·      57 million Americans with Disabilities

·      5.5. Million disabled American Veterans

·      1 billion people worldwide

·      Would be joining supporters such as significant faith groups, the Chamber of Commerce, American Association of People with Disabilities, and many other groups in America/Worldwide.

·      No additional cost to the American taxpayer.

·       the treaty has been reviewed by Republican and Democratic Attorneys General and by past Counsel to Presidents. They confirm that it does not threaten the sovereignty of the U.S., nor does it require any new legislation to comply with the treaty.

· Disabled individuals can contribute and be functioning members of society. As well as being suitable for American commerce. 

If you still need a little bit more background, then here is the history of the CRPD. The CRPD was first pushed forward by Mexico and then taken charge of by the country of New Zealand. For the first time in its history, the U.S. is not at the forefront of an International Movement, but it is late to the party.
       For a country with such sweeping legislation (such as the American with Disabilities Act), it is a shame that the CRPD already has 158 signatories, and the U.S. is not on the list. Please support the CRPD so that the American Disability Rights Movement can be heard in the 21^st century and not just known for something done over two decades ago.

 

 

 

 

Footnotes:

1.)http://power.aapd.com/site/Calendar?id=100081&view=Detail