Represented In Toy Land

When it comes to childhood development, one of the most crucial elements beyond the basic necessities is playtime. Besides having fun, which certainly has its own importance, playing helps to spark the imagination, create self-worth and prompt higher cognitive reasoning. This often times underrated activity of our youth profoundly impacts who we grow into as adults and who we are as individuals. Understanding this fact, it is no surprise that the toys we play with can effect how we see the world. You can learn a lot about what a society values based on the playthings of it’s children.

Recently, there have been two toy-related news stories getting some buzz: Mattel’s new Barbie variations and Lego’s first disabled minifigure (click to read articles). These positive developments towards a more inclusive culture reminds us that change is not only necessary but actually possible. Some may dismiss these decisions as so called “political correctness”, however, it is important to realize that representation truly does matter especially for children. In our formative years as adolescents, we begin to develop unconscious bias surrounding things such as race, gender and disability. Allowing all different types of children to be represented works to counter prejudices and raise the self-esteem of children who are considered different.

For me, toys were an integral of my childhood, they helped me to create worlds and explore my imagination. One of my all time favorite toys growing up were Legos—little plastic bricks with endless possibilities. The announcement to include a figure that is a wheelchair user is very exciting to me, it acknowledges that disabled people are indeed an important part of this world. With toys being such a major part of my life, I believe that representation of this nature would have positively influenced my own journey of self acceptance. The idea to make children’s toys more inclusive of disability is a growing movement, supported by grassroots social media campaigns such as Toy Like Me. 

The Barbie doll redesigns are yet another example of positive representation, when it comes to how women and girls are portrayed. Currently, the United States faces a crisis of body image related disorders especially among it’s female youth, a vicious cycle reinforced by a culture of unrealistic beauty standards. The latest Barbie line will introduce 33 unique dolls with a variety of skin tones, hair colors and body types. Amid declining sales numbers, Mattel has decided to address the long standing criticisms of Barbie and take the iconic toy into a new era. Whether this shift represents social change or just a savvy business decision, it is an important step forward.

As times continue to progress, I hope to see more toy companies follow the examples of Lego and Mattel. Children are the future; how they play and in turn how they view the world will deeply affect the course of our society. Inclusion is more than just feeling seen, it is about creating an environment that values diversity instead of simply tolerating it. Representation is not an act of kindness, it is truly equality and justice. 

Not A Prop: Ableism In Celebrity Culture

One of the most puzzling aspects of American life in the 21st 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.

Blogger Erin Tatum (left) and You-Tuber Annie Segarra (right).

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.

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.

The Fight Continues

In my previous post, The Disabled States of America, I chronicled the rise and major events of the Disability Rights Movement in the U.S., this week I would like to explore the continuing battle for disabled equality. As we celebrate a quarter-century with the Americans with Disabilities Act, it is important to realize that the struggle is far from over. The goal of fairness and freedom is a continuum of progress build upon itself, forever reaching towards the future. Disabled people in America and around the world still face substantial hardship due to societal inequities and perceptions. As an activist and disabled person myself, I feel that it is important for everyone to be aware of the current challenges.

Disabled activist Frank Bowe, known as the Father of Section 504, once wrote, "America handicaps disabled people. And because that is true, we are handicapping America itself.” The limitations placed on disabled individuals by our culture, not only deny basic rights but also hinder the advancement of our entire society. With around 34 million people in the United States with what is considered a “functional limitation”, it is impossible to ignore the issues associated with one of the largest minorities in this country. Many of those with mental, physical, visible and invisible impairments continue to struggle with lack of accommodation, difficulty getting funding and assistive equipment, poverty, damaging stereotypes, abuse and poor representation. I strongly believe that as a nation and as a global community we need to take a hard look at the treatment of disabled people.

As I mentioned, a major concern for many disabled individuals is poverty, with disability being both a cause and result of being poor. Currently in the U.S., physically and mentally impaired adults find themselves twice as likely to be living below the poverty line even with government assistance. A fairly recent Huffington Post article (click to read) describes this relationship between disability and poverty as well as a few companies working to break down these barriers. Obviously, not all disabled people are able to work and nor does a person need to work to have value in life, but those who can and desire to work face overwhelming odds in the workforce. The ADA may have helped to legally limit workplace discrimination, however, it is still mainly up to employer to decide what is considered “reasonable accommodation” and some organizations remain legally allowed to pay far below the federal minimum wage. The prospect of economic independence for disabled individuals able to work is still very low despite advances in accessibility and assistive technology. 

Another considerable obstacle when it comes to being disabled in the U.S. is the structure of the medical equipment industry. For those who rely on assistive technology, the battle for essential mobility, communication and health related devices can be a lifetime struggle. My family and I have experienced these challenges firsthand, each step of the process as complex and tedious as the last. My blog post from last year, A Work In Progress, discusses some of the challenges of getting a power-wheelchair. Navigating the channels of doctors, insurance companies, service providers and the government is a harrowing task for those familiar with the system and a complete nightmare for the inexperienced. The resources that disabled rights activists fought so hard for do exist but no one teaches you how to be a disabled person. 

To me, the biggest problem that remains is inaccessibility, the barriers both physically and societally. Accommodation is seen as a luxury and even a burden, our identities reduced to either pity or inspiration, entire systems stacked against us, our lives seen as inherently broken. Disabled people live in a society that was not created with us in mind, a world that feels like it’s simply not meant for us. There may have been victories won, laws passed and outcomes altered but progress must continue within our culture's consciousness as well as in its actions. Disabled activists have shown me what can be done, my own life and the lives of others have shown me what must be done and it is up to all of us what will be done.

The Disabled States of America

History is made by those who challenge the status quo, those who seek change within and far beyond their own lives. Movements for equality are born from the devoted few making the voices of the many singular. When a marginalized group speaks up in the name of freedom and justice it is often an act of necessity; it is not simply that they can be heard, it is that they must be heard. When most think about campaigns of social justice the images that generally come to mind are that of the African-American Civil Rights Movement, Woman’s suffrage or LGBTQ rights, however, one of the more overlooked but equally as important battles is the American Disability Rights Movement.

Throughout history disabled people have largely be excluded from mainstream society. People like myself in the past faced mass institutionalization, abuse, neglect and even death. Progress towards better treatment was painfully slow despite advances in technology and culture, even after the U.S. was lead by a disabled president, Franklin D. Roosevelt for 12 years. Prior to the Disability Rights Movement, being disabled was widely regarded as a purely medical issue and not a matter of social equality. One of the first major concepts presented by disabled rights activists was that accommodation and inclusion were not simply acts of charity but instead basic human rights. 

It is no coincidence that the push for disabled rights came at the heels of the Civil Rights Act of 1964 and the powerful efforts of black activists such as Martin Luther King, Jr., Rosa Parks and Malcolm X. Many disabled individuals felt that the Civil Rights bill, while a major victory on the road to equality, failed to protect against discrimination based on disability. Much like the fight for racial justice, disabled activism set out to change both perception as well as legislation. As Margaret 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.” This pivotal campaign for the fair treatment of disabled Americans certainly echoes Mead’s sentiment.

Early on, a crucial milestone of the larger disabled movement was the Independent Living Movement in the 1960’s, where activists such as Ed Roberts from California advocated for equal living, educational and work opportunities for disabled persons. In turn, it began to shift public opinion leading to the first federal legislation. The Architectural Barriers Act of 1968 was passed to address the barriers that physically disabled people faced within society. 

Another major turning point was the 1973 Rehabilitation Act, which was further expanded in 1977 due to widespread direct-action protesting lead by people like Frank Bowe and Judith Heumann (currently Special Advisor for International Disability Rights to President Barack Obama). The Rehabilitation Act and specifically it's section 504 provision prevented any organization receiving government funding to discriminate against qualified disabled individuals. 

However, the most important event to date in the history of disabled rights in the U.S. did not occur until 1990, when the Americans with Disabilities Act (ADA) was passed. This sweeping bill was imposed by congress and later signed into law by President George H.W. Bush twenty-five years ago this past July. The ADA, while certainly not perfect, is intended to end discrimination towards a wide array of impairments and illnesses. The groundbreaking law was made possible by a diverse group activists and lawmakers. 

A very notable cross-disability organizer and ADA advocate was Fred Fay, who was able to remotely unite and manage the cause quite literally flat on his back. Dr. Fay was paralyzed at the age of 16 and due to a spinal cyst spent the last 25 years of his life in a laying position, he was a pioneer of disabled rights his entire career able to bring together multiple disability groups under the common theme of stigma and oppression. He once said, “Disability is equal opportunity, anyone can qualify at any moment.’’

The brave men and women of the Disability Movement devoted their lives to the betterment of disabled people everywhere, I owe a personal debt of gratitude to the work of these amazing people. So many things I am able to do with my life today are the direct result of this powerful social justice movement. I am inspired to continue the fight for a better tomorrow each time I learn about the efforts of civil rights activists, they are living proof that our voice matters.

Unwanted Attention

Being different can often be an exercise in self-acceptance, a battle of confidence versus perception. Loving yourself in a world that views you as inherently other often takes a great deal of strength. The ability to go out in public without feeling like a spectacle is a luxury some people take for granted. For many visibly disabled people, one of the biggest lost freedoms is being anonymous, going unnoticed. Many times, blending in is simply not an option.

Throughout my own experience of being disabled in a visually obvious way, I have had my fair share of uncomfortable situations. Just leaving the house can be quite a test of patience from time to time. I believe our culture has certainly become more understanding and accepting but there is still a long way to go. When my brother and I go out in the community it is always a bit of a gamble when it comes to unwanted attention. Odd comments and awkward gazes have a way of following us wherever we go.

Personally, I am fully aware of the reality that my appearance is a little different from most and I do generally give people the benefit of the doubt. I try to be as tolerant as possible, however, this constant feeling of otherness does have an effect on self-esteem. I find that just being stared at can fill me with a bit of uneasiness, it’s something I have to consciously ignore. It is important to note though, that the majority of odd looks we receive often times come from small children which I am quite understanding of. The truly troubling instances come from full grown adults blatantly starting at us, as if we were gorillas at a zoo. 

Most of the adult gawkers tend to stay behind the proverbial glass but, once in a while, some people are bold enough to make a comment or ask a question. Again, I usually attempt to be as polite and accepting as possible, after all, genuine curiosity is only natural. What is difficult about these encounters is the way people choose to go about approaching us. Very rarely will strangers address my brother and I directly, typically they will only speak to the nearest abled person with us, as if we were not even there. Each time this happens I am left feeling a bit self-conscious, frustrated.

These acts of ignorance, while many times well-meaning, can be isolating and upsetting when you just want to live your life. To me, these feeling are more limiting than anything my body could cause and they make that said body much harder to love. As a person who likes to look at the bigger picture, I believe the root cause of how disabled people are treated truly comes from a lack of knowledge. I am a strong advocate of better disabled representation precisely for this reason. I hope for a future where the full, brilliant diversity of humanity is recognized and embraced, where all people can move freely without feeling different.

Glimpses into the world of disability: A Mike Vaughn post

Hey reader’s of MAN. MYTH, Mike Mondays! The Man himself - the loony, hapless, and visionary author of this blog, Mike Mort - has tasked me with a guest blog for this week’s entry. I have so chosen to accept the blogging celeb-shot and it is with great pleasure that I hope to contribute to an ongoing discussion about disability, perception, and accessibility. My name is Mike Vaughn. I am a current physical therapy student at the University of Maryland-Baltimore, and long-time friend, trivia compadre, and frequent discusser of social issues with Mike M. I recently spent a day wheeling around Baltimore in a manual chair for an assignment as part of my program, and learned quickly the challenges to public accessibility that exist even in some of the more popular, affluent parts of the city.

#sweaterswag and goggs

Disclaimer: This is NOT a sympathy piece. In fact, sympathy towards people with disability is harmful and I hope to communicate that with my brand of creative license. I want to bring up some current issues with accessibility and generally comment on how to collectively better understand disability. It is my hope to affect the perception that disabled people are not disabled because of any physical, intellectual, or language impairment in their own bodies. Rather, it is the society around them causing disability – through the inequality in access and the maladapted attitudes and social norms. As we will see, there are many people with different body impairments who have made extraordinary contributions to society. Unfortunately, for most facing disability, the barriers to access are extensive and the reality of exclusion is widespread. Misperceptions and unjust realities of disability are, luckily, within our grasp to CHANGE. Posthaste, lets get the party started…

           People are motivated most profoundly by what they see. The physical image is the most powerful way to conjure emotion and understanding. Photographs are so intensely visceral, immediately having the ability to tug at your core and force a reaction. I feel that the global response (social media and elsewhere) to images of the Baltimore riots in the wake of Freddie Gray’s death is the most recent testament to this. The universality of the physical image is astounding, and I think these images strengthen my case → rock your world. It is from this framework that I introduce an issue in accessibility that may at first seem superfluous or superficial, but is really quite pivotal.

                   International Symbol of Access (ISA):

Current

Modified ISA (proposed by
disability activists) 

            

        This story of symbols starts with a bunch of grass-roots activists in Boston who chose to advocate their message with a touch of healthy vandalism. With spray-paint in hand, these guerrilla artists took to the streets and covered existing handicapped signs with their new icon (right) to spread a message. Their illicit actions began to gain support and soon grew into an international movement, now advocated by the ADA-compliant Accessible Icon Project. The new, emotive ISA conveys a new way of thinking about disability – one that is badass, active, and empowering. This public image takes a baseball bat to the damaging stereotypes of disability and restores dignity. People with disability are not victims, passive, or constrained, and this image has the potential to powerfully affect change in perception.

             Above is another example of a captivating, inspirational image. The late comedian, journalist, and disability advocate, Stella Young, argued that this image is actually harmful and exploitative to those with disability. This meme and many other similar media images are what Young referred to as “inspiration porn” in that they objectify a group of people (disabled people) for the gain of another group. Young distinctly remembered a time during her adolescence that she was a victim of this objectification when she was nominated for a Community Achievement Award. Young said in her Ted talk lecture that she went about a pretty normal life and “really didn’t achieve anything if you take disability out of the equation”. Further, she stated that she felt offended by people who would approach her and call her brave or “congratulate me for simply waking up in the morning and remembering my name.” Young encourages people to not treat disabled people as objects of inspiration for simply existing. Rather, she would argue, draw inspiration as you would from any individual – from acts of achievement that warrant inspiration.

Similar to the magnitude of images and symbols, language has a ubiquitous hold on the power of meaning. Healthcare has recently begun to move in what it sees as a progressive direction with the implementation of “People-First Language” in medical journals and in the patient-clinician encounter. People-first language (PFL) puts the person before the disability in order to describe what the patient has, not what the patient is. For example, instead of saying a “Parkinson’s patient,” healthcare professionals are now educated to say “a patient with Parkinson’s.” According to PFL advocates, the previously used “Identity-First Language” classification (i.e. disabled person) places the brunt of focus on the condition and casts the person as a victim.

            I am educated to use PFL as a physical therapy student and future clinician, and this linguistic model has become commonplace in the medical institution. HOWEVER, many disabled people, activists, and disability scholars and advocates have responded with strong criticism of PFL. Some opponents of PFL argue that it further stigmatizes disabled people by drawing awkward and unnecessary linguistic labels that are not equally applied to more “normal” individuals. If PFL is more logical and humanistic, then shouldn’t we be calling a gay person “a person with gayness” or a Muslim as “a person with Muslim beliefs?” PFL may be creating new distinctions for a group of people that generate more regressive damage than forward, inclusive progress. The implementation of PFL is a contested social issue and it may be useful to ask people what their individual preference is.

            I recently participated in an Adapted Sports Day hosted by Baltimore Adapted Recreation and Sports and had the unique opportunity of talking with two guys with paraplegia. Ventura Catala had a fascinating background – he served as a paratrooper and operated an M203 grenade launcher rifle attachment during US military conflicts with Grenada and El Salvador in the 1980s, he suffered a spinal cord injury due to a parachute malfunction during his service, has since engaged in research in astrophysics (dark matter, string theory, quantum mechanics, etc.) and participated competitively in a number of adapted sports. His knowledge of spinal cord injury and medicine in general is far greater than my own, but he said something that really struck me. While eating his lunch, he looked up and said, “You know what the worst part about being in a chair is? …Always spilling food on myself! HAHAHA! I can never fit under any of the tables at restaurants!” At first I thought, “Really?? That’s the worst?”

It then occurred to me that people are always seeing Ventura – a decorated veteran, a competitive athlete, and a progressive intellectual and researcher – as a slob, and it is something he has little control over. I find Ventura’s anecdotal spilling problem to be emblematic of larger issues with accessibility and perception. Accessibility is a difficult fiscal challenge for businesses and public venues as well as an implementation and enforcement issue. It may be useful to keep an eye open for inadequate accessibility in buildings around you and advocate at the grassroots level, like the Accessible Icon activists. Write a letter to a restaurant or bar if you notice a point of difficulty for someone in a wheelchair, or simply talk to a manager. If you have the chance to use a wheelchair in public, DO IT, you may understand some of the difficulties from a physical perspective. It definitely opened my eyes.

         Being diagnosed with a disability can be a very devastating psychological trauma for some, this is the reality. Pity and sympathy are natural human reactions to this. I’m going to pull a classic blog maneuver and bring Nelson Mandela into the equation. Mandela faced hopelessness and physical confinement after being sentenced to life imprisonment for his role in the fight for freedom and an end to apartheid in South Africa. Mandela and his fellow prisoners referred to the prison on Robben Island as the “University” and tirelessly researched, debated tactics, and learned the language (Afrikaans) of their oppressors even when there was no realistic chance of release from prison in sight. Mandela’s vigilance remapped the contours of human progress and thought, and this was all accomplished from 27 years in a prison cell.

           It’s time to flip the script in perception of disabled people/people with disability. Let’s think instead that these are people with ability. Mandela chose to be a person of ability, despite his physical confinement. I think society (myself included) needs to throw away any assumptions and preconceived notions about the restrictions of a disability and replace them with the potential of ability. At the same time, remember that disability is a reflection of the (fixable) barriers erected by society, NOT the reflection of a diminished potential for achievement among individuals with various physical impairments.

          I am just beginning to involve myself with discussions involving disability and am by no means an expert, so please add your comments/criticisms below. I would be very grateful for any feedback. Meanwhile, check out some people with ability:

Stevie Wonder - musician, singer, songwriter, producer (Blind)

Aaron Fotheringham - extreme wheelchair athlete, first to perform a backflip and a double-backflip in a wheelchair  (Spinal Bifida)

Team USA wheelchair rugby - known to competitors as "Murderball"

Stephen Hawking - theoretical physicist, cosmologist, and author (ALS)