Category Archives: Uncategorized

What Hollywood Gets Wrong

Movies can act as both a mirror and a window, allowing us to reflect upon ourselves and see beyond our own experiences. So often unfortunately, that mirror is cracked and the window shut for disabled people. The film industry has long maintained a troubled relationship with the disabled community. In front of and behind the camera, disability remains widely misrepresented and excluded. Filmmaker and fellow disability activist, Dominick Evans remarks in his own blog post“We cannot make better, accurate, disabled-inclusive films, so long as Hollywood is able to continue shutting us out.”

maxresdefault (6)The upcoming romantic flick, Me Before You is a prime example of how movies can get disability wrong. Based on the novel by Jojo Moyes, this film tells the story of a caregiver (Emilia Clarke) who falls in love with her disabled client (Sam Claflin). This plot seems harmless enough on the surface, but dig a little deeper, and the problems become quite apparent. A major aspect of the storyline, only hinted at in the trailer, revolves around the paralyzed Will Traynor character wanting to end his life. [Spoilers ahead] Despite his extremely attractive love interest and apparent new lease on life, he still kills himself. Not only does Will die at the protest of his loved ones, but his death actually financially benefits Louisa.

This all-too-common Hollywood stereotype, sends the message that living with impairments is a fate worse than death. Disabled people committing suicide is, at times, almost glorified. Abled audiences are often compelled to see this decision as a noble act of strong conviction. The topic of euthanasia can seem like a compelling plot device for filmmakers. However, it’s an extremely limiting view of disabled existence. What does it say about our culture when the most frequent portrayals of disabled autonomy revolve around our deaths? Despite what movies may suggest, our sole motivation in life is not to die, be cured or  inspire others to #LiveBoldly (Me Before You‘s tagline).

These widespread misconceptions in mainstream cinema, largely stem from the lack of inclusion. Disabled people are denied a voice at nearly every level of the filmmaking process. Studios will rarely hire disabled actors, writers, directors or even consultants. The industry justifies this blatant ableism with perceived profit loss, yet makes millions from poorly telling stories about disability. The film Me Before You, uses a non-disabled actor to play a disabled character in a movie based on a novel written by a non-disabled author. It is no surprise that this movie is such an incredible offense to the disabled community.

The outcry for better representation is certainly not a new phenomenon; Hollywood just simply refuses to listen. This isn’t about forcing diversity, as some believe it to be, this is about the day to day struggles of disabled people everywhere. It’s time that the motion picture industry pull back the curtains of falsehood and let the sun shine in. It’s time they flung open the windows and let the world see the true face of disability. It’s time for our lives to be reflected on screen without the fractures of ableism. If art is a glimpse into truth, it should set us free, not hold us back. If film is a glimpse into the soul, then it should be free of the fog of hopeless and strengthened by our resolve to survive.

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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.

Blog collage

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.

Shifting The Disabled Strategy

The movement for disabled equality has been an ongoing battle for several decades, constantly evolving to meet the needs and conditions of the ever-changing times. The disability community, myself included, is very familiar with adapting; a skill, born out of necessity, that gives us a unique advantage. Much like every major social justice campaign, innovation is essential in order to remain relevant and effective over time. At this point, I believe a major shift in strategy is needed to continue improving the lives of disabled individuals. This is by no means a criticism of specific activists or organizations but simply my suggestions based on personal observation and discussion with others in the field of activism.

Wheelchair logo new.pngIn my opinion, the first major step is to create a consistent message across the entire disability activism community. It is important that we work to create a sort of concise elevator pitch/mission statement that establishes core values, desired outcomes and places disabled voices at the forefront of the movement. Many other types of activism benefit from this method, for example those who believe in things like feminism, reproductive access or racial justice can explain what they are about much more easily than disabled activists. Having an actionable and succinct message is crucial for raising the public discourse and attracting allies to the cause.

Outreach is the next key aspect of social justice that disability activists could expand upon. From personal experience, I have learned just how few abled, non-chronically ill or neurotypical allies the movement truly has. Despite how difficult it can be to explain even the most simple disability philosophy ideas, I think activists should still strive to educate those beyond the disabled community. Fostering outside support is especially important considering the fact that disabled individuals do not have the same amount of resources that other marginalized groups have, due to the inherent inaccessibly of the world.

18995_133068383521617_651254922_nTo me, the biggest source of potential allies should be other forms of social justice activism that overlap with disability i.e. women’s equality, economic disparity, LGBTQA+ rights and racial justice. Tapping into existing movements can provide highly motivated individuals that are already interested in activism. It is paramount that we encourage other groups to become more inclusive of disabled people. Allies are extremely important but those who are actually disabled should remain in leadership roles and be the majority of voices being shared.

Overall, I feel there should be a shift in public narrative that reflects the current state of disability affairs. The ADA may have laid the groundwork for some of the basic rights but the fight for access continues every day, this fact must be more widely known. In the short time I been more involved with disabled activism I have met an incredible network of devoted leaders and citizens with a very personal yet far-reaching set of goals. Every day I learn something new that challenges my views about disability and what it means to be disabled person, I hope that others can learn the same from me.

Reclaiming The Accessibility Logo

Throughout the course of human history, symbols have held an important place in our collective consciousness. From cave drawings to hieroglyphics, street signs to Emojis, pictures have long been a means of sharing messages. Symbols can convey emotion, relay important information, tell stories, represent what is important to us and even alter the way we think. One of the most recognizable symbols in our culture is the international accessibility logo; a rather stiff looking stick character that conveys that society is putting forth an effort, at least minimally, to accommodate disabled people.

accessibility-iconWhen activists from the Accessible Icon Project set out to update the existing logo they fully understood the power of of symbols, that a picture truly is worth a thousand words. Brian Glenney and Sara Hendren from Massachusetts designed the new symbol as a way to counter the stigma associated with disabled individuals by portraying wheelchair users as more active. This updated logo was initially created as part of a guerrilla art movement, spray painted across existing signs, but was later adopted as my home state of New York’s official accessibility symbol. While there are still a great many hardships and inequalities present for the disabled community, I believe this symbol represents a positive change in perception

Building off of this concept, I decided to undertake a little digital art project to create a few of my own disabled logos in the same art-style. One of the first symbols I created was Darth Vader, being a massive Star Wars fan and all. There was just something so fun and empowering about depicting one of the most iconic villains of all time as a wheelchair user. Another character I created was Captain America, one of my favorite superheroes, I enjoyed making this symbol… super. I ended up sharing these logos on a fellow activist Jensen Caraballo’s Facebook group, Disability Community: Pride and Culture, where I realized how much people were excited about these creations.

Below are all the logos I have created so far…

Wheelie Vader.jpg

Darth Vader

Disabled Batman2

Batman

Disabled Wonder Woman.png

Wonder Woman

Disabled Batgirl

Barbara Gordon/Batgirl

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Barbara Gordon/Oracle 

#TheAbleistScript: What We Can Learn

1446842995-TheAbleistScriptRecently disabled social media activists created a campaign using the hashtag #TheAbleistScript to shed light on the everyday ableism that is pervasive in our culture. There are so many words and ideas, scripts written by society, that reinforce the oppressive system of ignorance, hostility, erasure and discrimination towards disabled individuals. The Twitter based discussion has allowed disabled people of diverse impairments and backgrounds to share their experiences and voice their frustrations. Personally, being fully aware of the trials and tribulations of being disabled in an ableist world I was eager to put in my two cents, so to speak. While I felt strongly compelled to contribute, I also was equally interested in learning a few things.

Some of the biggest lessons I believe we should take away from this campaign are…

Ableism is a massively intersectional issue
The poor treatment and misunderstanding of disabled people is not a singular isolated problem it is deeply intertwined with almost all other forms of oppression. Things like police brutality, racism, homophobia, transphobia, misogyny and poverty, all overlap with ableism. Disability transcends race, religion, gender, economic status and age; any person can become disabled at any point in life.

Words have a major impact
The negative things that are often said to disabled people have a damaging effect on self-worth and confidence. The vast majority of the disabled population encounters microaggression, ableist language and hate speech throughout our lives. The words and phrases that abled people use, many times unintentionally, send harmful messages and reflect a deep-seated ableist narrative.

Representation is a necessity
Disabled people must overcome a myriad of false perceptions and stereotypes, one of the most effective methods of rooting out these views is positive representation. How disabled individuals are portrayed in film, television, literature, news media, etc. alter the way people think about disability. When it comes to representation, the younger that people are exposed, the easier it becomes for abled people to be understanding and for disabled people to love themselves.

The need for disabled allies
Much of the time there is great discussion within the disabled community, which is extremely important, but more people who are not disabled should be aware and supportive of the cause. The fight for disabled equality and perception unfortunately is not as well-known as some other social justice movements and even some of the most progressive seeming activists remain ableist. For example, mainstream feminism can sometimes fail to effectively include the struggles of disabled women along with the larger narrative of inequality.

Disabled people do not exist for inspiration
Inspiration porn and hero worship is a constant problem that so many disabled individuals to have to deal with. The extremely othering feeling of being put on a pedestal for simply existing creates barriers between abled and disabled people. Pity often goes hand-in-hand with the idea that impairments automatically make someone inspirational.

For disabled people, I feel that it is extremely important that we continue to have a voice on social media and in general. #TheAbleistScript is certainly not the first campaign regarding disability on Twitter and it certainly will not be the last, it serves to remind us how much work needs to be done in order to rid the world of ableism. This reminder also comes with hope that things will continue to change, that progress is always within reach. As Margret 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.”

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Forward Unto Progress

Progress; one of the most important aspects of life, it is what fills us with purpose and what allows us to grow. In the world of disability, progress is absolutely key, individually and as a culture it is the catalyst for better lives. On a personal level, change is somewhat of a constant and something I have had to learn to embrace. Being disabled for over 15 years has radically altered how I see the world and who I am as a person. As I have grown older I have begun to reject my own internalized ableism and recognize disability as an indivisible part of my unique identity.

635660918521092486-689122-1-In 1998, my younger brother and I were diagnosed with Duchenne Muscular Dystrophy, a progressive neuromuscular disease. At first, this news was devastating for our family, it felt as if our future had been stolen from us. With little to be done medically, getting involved with the Muscular Dystrophy Association (MDA) seemed to be in our best interest. The organization represented the best chance to find a cure, our priority at the time. This was still in the era of the Jerry Lewis MDA Labor Day Telethon, a 20+ hour parade of absolute pity and exploitation. A telethon repeatedly criticized by disabled activists for its reinforcement of negative stigma.

I was just a child at the time, so naturally I went along with fundraising and general cure based advocacy, it simply felt like the right thing to do. Organizations like MDA rely on the feeling of powerlessness that many families face in order to raise money and awareness. It was my parents who eventually decided that instead of fighting for this misguided cause we would fight for independence and self-determination. We embraced the get busy livin’ path of Morgan Freeman’s classic monologue from The Shawshank Redemption. An object of pity is something we have never wanted to be.

90ba2341907df12049cff3104aecf850As the disease progressed and mobility became more difficult, the need for wheelchairs arose. This was something that I was extremely reluctant to accept, I somehow saw it as a failure on my part. At the time, I refused to see myself as anything other than normal, how could I be one of those people? Looking back, I realize that I viewed disability rather poorly, I was afraid to be seen as a disabled person. Even with a brother in the same situation and a fantastic support network, it took years for me to let go of the internalized prejudice I held.

I can admit that my views were quite problematic in the past but I can also confidently say that I have learned and continue to learn everyday. My life is a testament to the power of activism, my perceptions have shifted because of people like Stella Young, Ed Roberts, Judith Heumann and Fred Fay. The disabled communities on sites such as Twitter and Tumblr have taught me to be proud of who I am, to feel a sense of solidarity with other disabled people and to develop a passion for the betterment of disabled life everywhere.


With this blog, I hope to educate others about the disabled identity and point out the inherent ableism in modern society. I would like to share my thoughts and the thoughts of others in order to shift perceptions and foster a sense of community.

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