Disabled Folks (We Get The Job Done)

All across the United States something powerful is happening, have you noticed? People are speaking up, speaking out and sitting in. Wheels are turning, tides are shifting and voices are demanding to be heard. In a country forged by resistance, protest and pure force of will, people are fighting for their very lives once again. Lives that our culture still finds inherently other, at times even lesser. A diverse group, organized under a common, sometimes conflicted banner known as disability. We’re strong, we adapt and we sure as hell get things done!

Disabled Protest

Right now, disabled activists are fighting arguably one of the most important battles since the passage of the Americans with Disabilities Act (ADA). Paralleling the movement for disabled civil rights in the 80’s and 90’s, organizations such as ADAPT are leading the charge. Things like equal transportation were not just gratuitously given by the government, they were demanded using direct-action protest methods. Activists today continue to make the “dis” in civil disobedience stand for “disabled”. From Washington D.C. to Chicago, from Ohio to Colorado, there are disabled people holding their elected officials accountable.

Currently, the Republican controlled White House, Congress and Senate are seeking to alienate self-evident truths. The health plan nicknamed “Trumpcare” would cost many disabled Americans their life, their liberty and certainly the pursuit of happiness. This bill would strip roughly 22 million people of health insurance and cut Medicaid by around $800 billion over the next few years. Since disabled people would be some of the most deeply impacted by the cuts, we’re bringing the thunder.

Disabled Protest 2

Activists like Anita Cameron, Stephanie Woodward and Gregg Beratan filled the hall Mitch McConnell’s office, willing to be arrested for the cause. In Denver, protesters took part in a sit-in that lasted nearly 59 hours. Among was disabled lawyer Carrie Ann Lucas who defiantly said, “We are not going down without a fight… I’d rather go to jail than die without Medicaid!”  Disabled activists are also extremely connected; for every one protesters on the street there’s a dozen more online. People like Dominick Evans, Alice Wong and myself use the internet as our platform for change.

In the battle to preserve healthcare, many lives hang in the balance and it’s up to all of us to fight. When politicians opinions can so deeply affect the life of someone with a disability, that life is inherently political. Democracy does not end at the ballot, it carries forward with every heartbeat and keystroke of protest. These are very uncertain times, however, there is still hope in resistance. As Martin Luther King, Jr. once said, “Our lives begin to end the day we become silent about things that matter.”


Activism In A Time Of Grief

They say time heals all but it is truly action that sparks positive change. In the realm of activism, we are motivated by this basic principle. To bring about change in the world and within ourselves, it takes a great deal work. Often times it means fighting through pain and grief, finding strength we did not know existed. That is the reality I’m living every single day, both personally and as part of a larger community. First Lady Michelle Obama recently remarked in an interview with Oprah Winfrey, “We are feeling what not having hope feels like.” Being a disabled activist has taught me that sometimes we must create our own hope through resistance.

Many in the disability activism community are sharing a similar sense of aguish as 2016 comes to close. Whether it be from the loss of someone close; a personal trauma or setback; the passing of a disabled role model, leader or person in the news. The passing of people like Carrie Fisher and all those who were lost to police brutality, ableism driven murders and lack of resources. Even the fear and uncertainty of the looming Trump presidency has brought about a sort of collective grief. Everyone’s grief is valid and important, however, we all experience it differently. My own emotional pain can be overwhelming at times.

On November 21, my younger brother Andrew passed away at the age of 22. I lost my best friend, my partner in crime and the biggest influence in my fight for disability rights and personal acceptance. Sharing the same degenerative illness, we had a level of understanding for each other’s experiences that very few ever get. He was the first other disabled person I had ever known, we truly helped each other find our sense of identity. He taught me to love myself, oppose pity and resist the limiting idea of “normal”. Not a moment goes by that I don’t miss him. The pain of this terrible loss is so still raw, each day a new stage of grief unfolding.

Grief is not a finite segment in time but rather an active process, shifting from one moment to the next. Everyone has their ways of coping, their own process of healing. For me, staying involved with the causes most important to me is a coping mechanism. Despite having, what feels like, a massive hole ripped in my life, I have chosen to fight on for what I believe in. I persist not because it’s easy to do but because it gives me focus. Resistance does not erase pain, it simply channels it into action. We may not be able to change everything that’s happened but we can still change the world for the better.

That being said, activism must go hand in hand with self-care; taking care of one’s own needs is a form of resistance unto itself. This is certainly something I find easier to preach than actually practice. My brother often reminded me to, as he put it, “Not neglect my own mental hygiene and physical health.” The times when I found myself feeling somewhat battered by activism, Andrew would be a little disappointed, much like Alfred is when Batman gets his ass kicked. My brother supported and fueled my passions but also understood the importance of self preservation in times of turmoil.

No matter what each of us are facing, we all have value. The biggest lesson that Andrew ever taught me was that compassion is infinitely important, for others and for ourselves. The change that we seek as activists is predicated on the actions of people, not simply the passage of time. Progress, whether it be societal, political or personal, is working to make tomorrow better than today. Activism in a time of grief is not about beating the storm, it’s about surviving it.

Kaepernick Isn’t Disrespecting Vets, Ableist Memes Are

The collective head of the internet nearly exploded recently, when NFL Quarterback Colin Kaepernick refused to stand for the National Anthem. This act of peaceful protest calling attention to racial injustice in the United States was met with a venomous response across social media. Even The Blaze’s Tomi Lahren slithered from her cave lair to deliver an angry ‘Final Thoughts’ rant. One of the most troubling responses however, came in the form a viral meme touting the image of a wounded soldier. It is yet another example of disabled veterans being used as political pawns and inspirational commodities. Strangely, for a nation obsessed with perceived patriotism and military service, we seem to have no problem exploiting our former service members.

1054281_rawImageFirst of all, it’s important to understand the reason why the San Francisco 49ers player sat out the Star Spangled Banner. In his statement to the press, Colin Kaepernick had this to say: “I am not going to stand up to show pride in a flag for a country that oppresses black people and people of color.” He is understandably upset, considering America’s documented problems of institutional racism. Despite the realities of police brutality, mass-incarceration and poverty among black individuals, some were still deeply offended by Kaepernick’s protest. Somehow his constitutional right to criticize our country was perceived as an insult towards the U.S. military.

To me, the biggest disrespect to our troops in this situation has actually been carried out by so-called patriots (and no, not Tom Brady). One of the more viral responses to come from the right leaning end of the internet featured the image of former Marine Zach Stinson, a double leg amputee wounded in Afghanistan. Sergeant Stinson is shown in his blue dress uniform holding himself up from his wheelchair by his arms during the National Anthem. Regardless of his military service, this is still a rather blatant example of inspiration porn. Not only is it using a picture of someone without legs to make quip about standing but also denies Sgt. Stinson a voice. We truly have no idea how he feels about Kaepernick or anything for that matter, he is just used a patriotic object. Instead of feeling outraged over a football player peacefully sitting down in the name of black Americans, maybe we should care a bit more for the veterans we use as memes.


Those who are so quick to cite the troops in their faux-patriotism would be wise to understand the true struggles of those they “support.” As a country, we are failing our veterans who have been wounded in both ways we can see and ways we cannot. Many disabled vets face poverty, homelessness and unemployment. Injured soldiers must deal with an overstrained and underfunded VA hospital system. Some must navigate astronomically long wait times for essential surgery, mobility aids and counseling. Right now in the U.S. an average of 22 veterans commit suicide per day. Our soldiers are not walking or rolling sacrifices at the altar of Uncle Sam, they are thinking, feeling human beings.

I certainly cannot speak for how all veterans feel and that’s exactly the point. They are are an extremely diverse group of individuals with their own opinions, like the trending #VeteransForKaepernick. The problems of racism, ableism and institutional failure are deeply intertwined and all worthy of our attention. Patriotism is about more than just a flag or song, it’s about supporting our fellow humans. It is time we to start caring about the people who actually live in America more than America as a construct. I believe we should support who we send to war and not war itself. As a nation we need to declare with our words and actions that black lives really do matter!

The Violence of Ableism

Disabled people around the globe face a crisis of violence and abuse, a crisis nearly as old as humanity itself. Throughout history, disability has been viewed with revulsion, stigma and hatred. Things may have improved somewhat yet the trend of animosity persists, it’s roots buried deep within our civilization. The horrific murders of 19 disabled individuals at a care facility in Japan proves, once again, just how deadly ableism remains. For those of us who are disabled, this killing spree represents an attack on our very existence; not a lone incident, but rather a symptom of a much larger problem.

Photo 20160728205033011On July 26, disabled residents of the Tsukui Yamayuri En care home in Sagamihara, Japan, were brutally stabbed in their sleep, leaving 19 dead and 26 injured. The attack was carried out by 26 year old Satoshi Uematsu, a former employee of the facility. His reasoning, outlined in a chilling letter sent to the Japanese government in February: to euthanize disabled people for “The sake of all mankind…” This anti-disability motivated act of violence is the worst mass-killing in Japan’s history since the second World War. Disturbingly, the story barely registered on America’s media radar outside of the disabled community and was reported with phrases like “mercy killing” by the Japanese media.

This tragedy is absolutely heartbreaking and deeply unsettling. I find myself filled with sadness, anger and fear for disabled people everywhere. This is unfortunately just one example of the pattern of violence our community endures. Those with physical and mental impairments are a widely targeted group when it comes to things like abuse, sexual assault, police brutality and hate crimes. Mistreatment of this nature often goes hand-in-hand with dehumanization, devaluing of certain lives. A trend that has cost disabled lives across history, from Ancient Sparta to Nazi Germany.

Ableism In AmericaPersonally, I’m fearful of how easily something like the Sagamihara attack could happen in the United States. Around 1.4 million Americans live in nursing homes, more than 200 thousand of which are non-elderly disabled people. We live in a country where it’s far easier to buy an AR-15 and 500 rounds than it is for a chronically disabled person to get a wheelchair. There are citizens and elected officials alike that don’t believe everyone “deserves” healthcare. We have a man running for president that openly mocks disabled people, who’s companies have been investigated multiple times for ADA violations. Our movies, TV shows, books and news stories continue to reinforce the narrative that being disabled is a life of inherent suffering.

As a society we must continue to dismantle the negative perceptions and systemic oppression that disabled individuals experience. Ableism is not something the disability community can fight solely on it’s own, we all must play a part. This violence, in all it’s many forms, cannot be driven out by the apathy of non-disabled people. Elie Wiesel, the late Nobel Laureate and Holocaust survivor, once said, “The opposite of love is not hate, it’s indifference.” To those who’s minds and bodies work differently, I am with you. You are not alone, you are loved and your lives have value.

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.

Not Your Inspiration

“You are so inspiring!”, they exclaim in that condescending tone, thoroughly unaware of the nuances and uninteresting bits of life with a disability. This phrase, heard all too commonly, reduces the complexity of human existence to one vague, blanket adjective. Inspiring can be a well-meaning descriptor for disabled people but has deeply problematic implications about how our society views disability. Personally, I have always fought the idea that someone in my situation should be considered inherently exceptional for simply living their life. Long before I was ever involved with activism or heard phrases like “Inspiration Porn”, I felt uncomfortable being put on a pedestal for being disabled.

10511086_1073066282720570_1304192140218867996_nAs a child, I found it difficult adjusting to being disabled; Duchenne Muscular Dystrophy not only weakened my muscles, but it also changed how people perceived me. I began to be seen, by adults mostly, as a brave kid battling a heartbreaking incurable illness, instead of just a regular child who happened to be disabled. Whether I knew it or not, being considered heroic went hand in hand with the pity, I so vehemently detested. My avoidance of this inspirational label was often mistaken for humility but I legitimately found it to be unsettlingly. It was a very liberating experience years later, when I finally realized that others in the disabled community felt the same way and that there were legitimate reasons for this feeling.

Life as a disabled person is filled with barriers, most stemming from a lack of accessibility and understanding. The constant struggle to fit into a world not designed with you mind, both physically and socially, can have a very othering effect. Continually being viewed as an object of inspiration just adds to that feeling of separation, it can be dehumanizing in it’s own way. Being told by an abled person that you are inspiring, is much like the complement equivalent of a participation medal. It is a generally well-intentioned gesture but is ultimately hollow and self-serving for the person giving it out. The view that we are intrinsically excellent for merely existing often lessens our actual achievements.


No, just no…

This knowledge that people will see you as inspirational no matter what you do, can actually create the feeling that no accomplishment is ever good enough. As a child, I often overextended myself, beyond what was even healthy, because of an internal necessity to prove my capabilities. This perpetual chip on my shoulder, while motivating, made me very hard on myself when it came to things such as school work and socializing. I have since learned fighting the inspirational trope doesn’t need to come at the expense of self-esteem, we should take pride in the lives we have. Not all disabled people need to be billionaires or astrophysicists to have value, we just simply don’t want our only value to be uplifting non-disabled people.

Culturally, being disabled is still widely viewed as a singularly negative experience which leads many to rationalize this perceived suffering as a reason to be more appreciative in their own lives. Success can certainly be harder to attain in this largely ableist world, however, that does not mean disabled existence inherently terrible. Physical and intellectual impairments are simply another form of human diversity that deserves to be respected. When we achieve something, it is not our disabilities that we overcome but rather the obstacles set by a society that views us as separate from the rest of humanity. Most of us who are disabled would much rather be accommodated than worshipped.

Pity and The Prom

We’ve reached that part of year once again folks, prom season; a time of excitement, overpriced gowns and ableist memes. Most of us, disabled or otherwise, have at one point seen viral photos and stories that involve disabled high schoolers being asked to prom. Generally accepted as feel-good lessons about faith in humanity, these type of posts harmfully exploit disabled people and reinforce the concept that disability should be regarded with pity. Stories of this nature all too often focus on an abled person’s “selfless act” rather than the actual experience of the person who’s been asked. Disabled teens certainly deserve every opportunity that their non-disabled peers have but also deserve the dignity of not being used as Inspiration Porn.

13001225_214958825544416_665824316820150497_nThe most recent example of these parasitic memes making it’s rounds on Facebook, is a photo of a young woman in a wheelchair wearing a dress and holding hands with an able bodied young man in tuxedo. The text in the photo reads: “He asked her to prom even in her condition! Like and share=respect.” First of all, this particular image has been shared without context which creates the impression that it’s being used without the knowledge or permission of the young people shown. It is clear that the purpose of the photo is to generate online traffic and even possibly to make money, much like the posts which encourage users to type “Amen”. Many times, these “like and share” style images are part of a scam known as “like farming”, in which users elicit a massive amount “likes” and then sell the post.

Secondly, the language of the post is very demeaning to those of us who are disabled. The phrase, “Even in her condition!” implies that her disability is a burden and that disabled people are ultimately undesirable. This troubling message indulges the idea that interacting with us is a heroic sacrifice instead of a meaningful two-way encounter. We are meant to believe that this boy couldn’t possibly enjoy spending time with a sad disabled girl or, God forbid, actually find her attractive. This degrading narrative unfortunately extends far beyond the realm of Facebook scams, prevalent in the news media and even among parents of disabled high school students.

DSC02148Being a former disabled prom invitee myself, these kinds of stories have always made me a bit uncomfortable. When I was in high school, my best friend at asked me to the junior prom; not to be a hero or because she felt bad but simply because she liked hanging out with me. My personal experience could have easily been used as a sappy human-interest piece, when in actuality in was a fairly average story. Going to the prom wasn’t a spectacular, life-changing event for me, I honestly had far more fun playing video games with my friend after. Not only can these “inspirational” tales be condescending but also downright misleading.

The problem is not that these prom stories themselves exist but rather how they are told and the intent behind them being shared. I think it’s wonderful when disabled people are accepted—so many times we are not sadly—but we should be normalizing disability, not exploiting it. The way to tell a compelling and truly respectful story is to talk to the people who experienced it firsthand, the people who are disabled. The most effective strategy to avoid being ableist is to talk to us, not for us. Disabled people are more than just viral photos or uplifting anecdotes, we are real human beings with the full range of emotion, that don’t want or need pity.

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.
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.



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.

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