This past weekend I launched a new blog dedicated to disability and the news called disabilityfrontline.com. As hopefully some of you have noticed, I’ve been publishing more articles on Wheelchair Diaries for the past month or so but reached a point where I felt a new site dedicated to my “Entries” would attract more readers. While I intend to cross publish content on both sites, Wheelchair Diaries will remain a blog dedicated to the movie and public speaking, while Disability Frontline will feature news pertaining to disability, with people in addition to myself hopefully contributing content. Stay tuned to Wheelchair Diaries for deleted scenes and public speaking information and check out Disability Frontline. Thank you for your loyalty.
He was advised not to attend his own film festival. He did so anyway.
He was told that paparazzis were going to take pictures of him that focused on his absent lower jaw. He publicized where exactly he was going to sit.
He had lost his ability to eat and drink. He wrote a cookbook.
Many will remember Roger Ebert, who died last week after his 11-year battle with thyroid cancer, for having one of the two most powerful thumbs in show business. But for the disability community, Ebert will be remembered most for his resiliency.
Despite losing his lower jaw and his ability to speak to cancer, Ebert continued writing for the Chicago Sun-Times and living his life as a public figure, appearing on Oprah in 2010.
“So let’s talk turkey,” Ebert wrote before his film festival in 2007. “What will I look like? To paraphrase a line from ‘Raging Bull,’ I ain’t a pretty boy no more. (Not that I ever was. The original appeal of Siskel & Ebert was that we didn’t look like we belonged on TV.)”
In a 2010 blogpost written for the Sun-Times, Ebert described getting the doctors to put Coke into his feeding-tube and went in depth about what it was like to lose the ability to eat. Ebert published his cookbook The Pot and How to Use It later that year.
Thirty-six years after becoming the first film critic to win a Pulitzer Prize, the Chicago-based Access Living group honored Ebert in 2011 with their annual Lead On Award for empowering people with disabilities.
“By continuing the work he loved after acquiring a disability, Ebert sent a message to the world that disability is a natural part of life that will impact everyone in some way at some point in his or her life,” Access Living posted on its website. “Just as important, Ebert sent the message that disability doesn’t change who we are and doesn’t stop us from pursuing what we love.”
A google news search of “cerebral palsy” will yield many results of a person with CP overcoming odds, with numerous quotations containing the word inspiration. Similarly, many books about disability perpetuate this repetitive song and dance. This is not one of those books.
Geri Jewell, who started out as a stand up comic and went on to appear on The Facts of Life and the HBO series Deadwood, spares nothing in her memoir. Jewell not only talks about growing up and trying to fit into Hollywood as a person with CP, but goes into detail about her battle with her sexual identity, drug addiction and faith.
Jewell describes her numerous battles with a self-deprecative humor that humanizes her in a way that is rare in autobiographies. This book is a page-turning validation of a social approach to disability; that is the largest obstacle a person with a disability faces is not his or her incapabilities but the resistance of society to accomodate his or her needs. Even though she explicitly reminds readers that at times her CP isn’t her main obstacle, she doesn’t have to because it’s evident in her life stories.
There were many times throughout the book where Jewell touched on very deep topics, only to move on without fully exploring them. For example, in the latter half of the book, she talks a great deal about the complicated relationship she and her siblings had with their father. However, she didn’t fully elaborate on that relationship when she was growing up and fails to really bring his character to life.
Still, Jewell’s candid humor and gut-wrenching honesty shines throughout the book as she chronicles the career that made her a pioneer for people with disabilities in the media.
Aaron’s life as a Dubliner has changed since he started living independently for the first time. After living in a residential community where others with disabilities reside, Aaron said last year that he was looking for an apartment outside the community, in a sense the Holy Grail of his quest to be independent. Aaron is active in the movement for people with disabilities, working for an independent living center.
In March 1991, police brutality and race relations were shoved to the front stage in the U.S. when a black man in L.A. was brutally beaten by police after a high-speed chase. His name was Rodney King.
In February 2012, excessive use of violence by law enforcement again became a theme in the media when an unarmed 17-year-old was shot and killed in Florida by a neighborhood watch captain. His name was Trayvon Martin.
But if you search for Robert Ethan Saylor on CNN’s website, there aren’t any results. Troubling because Saylor died in January after being detained by three off-duty police officers.
Saylor was 26 years old and had Down syndrome. After he saw Zero Dark Thirty, Saylor wanted to stay and watch the next showing. When he refused to leave the theater, even after confronted by a police officer, two others joined in to try to physically remove him. He was handcuffed and later died of asphyxiation.
Last month, a grand jury decided not to indict the police officers involved in Saylor’s death after an autopsy revealed that Saylor was susceptible to sudden death because of obesity, atherosclerotic cardiovascular disease and a heart abnormality. Saylor also had anger problems and issues with being touched.
While the police may or may not have acted professionally and are not guilty of any wrongdoing, Saylor should be alive today.
And while the police may or may not have proceeded according to the book, this tragedy provides an insight to the dramatic, and in this case fatal, consequences to institutional unpreparedness for encountering people with disabilities.
And still, whether or not you think the police have any sliver of culpability in this man’s death, the story still lies in the outskirts of the newscycle and national conscience.
A man was pushed to his death by police in a movie theater months ago, and CNN hasn’t, at least on their website, wasted a single word of reporting on it.
If institutional unpreparedness for people with disabilities continues, then there will surely be plenty more Robert Ethan Saylors. Just last week, a man who is a quadriplegic filed a lawsuit against Disneyland after he was stuck on a ride that had been evacuated, arguing that the theme park had no emergency procedure for people with disabilities.
Beyond the question of what Saylor’s death says about law enforcement and preparedness, the lack of coverage and discourse following this tragedy is an example of how society sometimes blatantly misses the mark when it comes to disability.
The name Robert Ethan Saylor should’ve been on the lips of every news anchor across the country.
WARNING: This video contains strong language and sexual content.
This was literally the last deleted scene of the documentary. Both Gavin and Francois are two of the film’s main subjects. In this scene, both men talk about a struggle which goes beyond ramps and curb-cuts. The scene is telling of how the question of love becomes more difficult to answer when one has a disability. An entire documentary could be produced entirely on how people with disabilities deal with the question of love.
The presence of people with disabilities on the screen – both big and small, as both documentary and fictitious characters – can only help to remove the taboo of disability and catalyze the inclusion of those with disabilities. Here are five movies on Netflix worth watching that pertain to disability.
My Left Foot (1989): This classic is based on the autobiography of Irish writer and painter Christy Brown (Daniel Day-Lewis), who had cerebral palsy. Growing up impoverished in Ireland, Brown had very limited communication as a child, but went on to use the tremendous dexterity in his toes not only to write, but to paint and have a remarkable art career.
Body of War (2007): Tomas Young – who joined the military after 9/11 – went to Iraq as a soldier and came back as a paraplegic. This documentary is at times hard to watch, as Young’s mental anguish and increased dependence on others is strikingly apparent. Young however re-engages in battle on the political front, speaking out against the war.
Praying with Lior (2007): This tracks the real-life journey of Lior, a boy with a comparatively mild form of Down syndrome, as he prepares for his Bar Mitzvah. The film moves beyond the logistics of living with Down syndrome and explores the interaction of disability and faith.
Quid Pro Quo (2008): What starts out as the story of a young reporter who uses a wheelchair turns into a disturbing exploration of “wannabe amputees” and demonstrates the elusiveness of defining disability.
Monica and David (2009): An upbeat story of a married couple with Down syndrome and their quest for independence. These two high-functioning adults find that as close as they come to living a “normal” life, it always seems out of reach.
At the inauguration of the new pope on Tuesday, Pope Francis stopped to bless a man with a disability before addressing the crowd at St. Peter’s Square. The new pope then called on Catholics to embrace the needy.
In his Huffington Post column, Professor Lennard Davis of the University of Illinois asserted that the gesture perpetuated the notion that people with disabilities are dependent on charity. I respectfully disagree.
I applaud the biblical context that Professor Davis puts disability in, referencing both the Old and New Testaments. I also couldn’t agree more with Professor Davis’ call for churches and masses to become accessible for people of all disabilities, including but not limited to those who use wheelchairs, who are blind and who are deaf. I echo and extend his call to all religions.
But this is to the extent that our opinions align. The article contests that the pope’s gesture embodies the medical model, which holds people with disabilities as dependents of society.
For too long, accessibility and social inclusion for people with disabilities haven’t been a priority. The pope’s acknowledgement of the man in the crowd suggests he is aware of such neglect. This blessing thus places a burden on him to advance the inclusion of those with disabilities.
The article asks why the pope decided to bless this man; that doesn’t the fact that he chose him based on his physical state contradict the assimilation that people with disabilities crave? But people with disabilities need not only be treated with equality but equity. That is, their disability needs to be recognized and in turn accommodated for.
The pope chose to bless this man, not necessarily as an act of charity, but because he recognized that his physical state undoubtedly caused him adversity. Despite such adversity, he was in the front row of a monumental crowd to welcome his new pope. It wasn’t in the name of pity but recognition of earnestness.
Professor Davis was correct in demanding that the pope make the clergy and the pews more welcoming to people with disabilities, but he hasn’t given the pope a chance yet. Indeed, Pope Francis can make a difference and hasn’t proven himself yet. However, he’s off to a good start.
It occurred to me the other day how ridiculously unnecessary it is for me to have to stop and do the math of how long the Americans with Disabilities Act has been the law of the land. Doing it is silly, not only because it takes me longer than it should, but also because it was signed by President George H.W. Bush only eight days after I was born. For 357 days out of the year, the ADA and I are the same age.
This is not just a quirky coincidence that I whimsically wanted to write about or an excuse to publicly reminisce about my birth. Instead, it represents how people with disabilities who were born around the same time as I was don’t know an America without basic accessibility rights; we were born on the cusp of a new generation of opportunities for Americans with disabilities.
Political columnist George Will called the fight for equal rights for people with disabilities “the last great inclusion”. If this is true, my generation will be part of it.
The differences between my generation, which has grown up with the ADA, and those that preceded it can be seen through the different educational experience between my aunt and me.
My dad’s youngest sibling Terri was born deaf. The majority of her education took place in the 70s and 80s, when there was of course no ADA. Section 504 of the Rehabilitation Act was indeed implemented in 1977, but was not nearly as clear and thus strong as the ADA.
My aunt bounced around public schools according to which had the best program for teaching deaf students. She also bounced between the mainstream and special education classrooms, as teachers and my grandparents at times didn’t know what was best for her.
“There was no interpreter in the regular classroom, so yeah I felt isolated then,” Terri said. “I was young so I didn’t care as much and felt normal because I was in the same classroom as all the other kids. But later on, there was no other Deaf. That’s when I started feeling isolation.”
By the time Terri was in sixth grade, my grandparents saw that she was falling behind and decided to enroll her in a school for the deaf, where she stayed until she graduated high school.
My experience was entirely different. I went to my public school’s district from the first day of preschool to high school graduation. I was in the same classroom as my able-bodied peers for the vast majority of the day.
Being deaf and having cerebral palsy are obviously not the same, but the contrast between our educations remains relevant and attests to the struggle I had been spared because of the ADA.
In 1997, with President Bill Clinton’s signing of the reauthorization of the Individuals with Disabilities Education Act (IDEA), the inclusion of students in disabilities in mainstream classrooms became more boldly explicit. I was in the mainstream classroom even before the signing, with the exception of receiving weekly sessions of occupational, physical and speech therapy.
One of the biggest components of reauthorization of IDEA in 1997 was that a regular education teacher had to be a member of the federally mandated Individual Education Plans (IEPs) for students with disabilities. I can only speculate how much easier my aunt’s education would be if such a measure was in place during her schooling.
It could’ve possibly saved her from frequently switching schools, maybe even enabling her to attend her hometown’s district with her four older siblings. But Terri didn’t do so bad for herself, earning her Bachelor’s Degree from Northeastern University and eventually getting her Master’s Degree in education.
The intended effects of most laws aren’t realized immediately, some taking generations before even getting a claw into society’s consciousness. The ADA is 22 years old (no math required this time).
As the law grows older, America will see an unprecedented amount of qualified, educated and competent young professionals with disabilities entering the workforce. People with disabilities are three times less likely to be employed and earn 75 cents to the general population’s dollar, according to information released by the U.S. Census Bureau last week. Over next decade or so, because of the maturation of the ADA and its ongoing amendments, it’s going to be harder and harder for employers to justify these numbers with the excuse that people with disabilities are simply less qualified and uneducated.