No More Names: The Clarence Family Tragedy & The Violent Trend That Must Stop

This kind of déjà vu is the kind that makes my stomach sink. Another story about innocent people with disabilities murdered by a caregiver. Tania Clarence, a 42-year-old mother from Britain, is accused of killing her three children with spinal muscular atrophy (SMA), twins Max and Ben, and daughter, Olivia, all under the age of five. Sadly but not surprisingly, the media coverage focuses only on how "devastating" the neuromuscular disease is, how much physical care the children needed and how burdensome that care is for the non-disabled without mentioning how devastating an act of violence directed at innocent children is. See the story here  The cycle has to end.

A hideous crime is a hideous crime regardless of if or not the person killed had a disability. Had the same crime been committed against able-bodied children, the article would've taken on a much different tone. However, with the coverage of a murder of a disabled child comes the underlying societal assumption that these lives did not carry the same value as others and don't matter as much when they are taken away. We have to stop presenting murder as an acceptable and even natural response to people with disabilities. I am not denying that supporting a person with a disability and living with a disability can be extraordinarily difficult, but we cannot use that as an excuse to turn to violence. Murder is murder, period. The justice system cannot let off some and not others based on the perceived value of the lives they took away.

I regret that this mother felt so alone that this seemed like the only solution. However, her loneliness and despair cannot be used to justify three lives snatched because they were reduced by society to nothing more than a list of medical needs. Life with a disability is so much more than that. In many ways, our lives are very difficult, but ultimately, we deserve to be treated as another aspect of a diverse human family. Many of our difficulties arise from ableist assumptions about what kind of life "is worth living". That is not a decision for our non-disabled peers to make. The lives of people with disabilities belong to them, and no one should have to live in fear of someone else deciding that he or she is better off dead. This is me, a person with a disability who is not so different from Max, Ben, and Olivia telling you not to write us off. If we continue to allow our story to be told by people who can only see it with fear, judgment, and pity, horrendous acts of violence will continue unchecked, stealing away bright lives under the cloak of mercy.

We live in a very sad world if those who require more help, more time, or more patience can be eliminated without the public outrage afforded to all other victims of violence. Many of my friends have SMA, and continue to live full, rewarding lives. They go to school, have friends, and have families. They have dreams worth fulfilling and lives worth living. They are not suffering from SMA. They are living with it, and they have a beautiful perspective from which we can all learn.

What saddens me as well is that the article said nothing about who the children were as people. They were merely described in terms of bleak medical jargon. I sit here and wonder what their favorite foods were, what they wanted to be when they grew up, what songs they liked to sing, and most hauntingly, how afraid they must have felt when the woman chosen to love and protect them slaughtered them. Yes, they had disabilities…. But killing them cannot be excused, much less disguised as an act of compassion.

Those looking to be compassionate should devote their time to improving our broken service systems, getting people the quality care they deserve, and reminding the world that people with disabilities have rights. The attitudes that classify us as less worthy lives challenge us more than our bodies ever will. Our lives are our lives, and no one has the right to dismiss them.



To Olivia, Max, and Ben, I promise you that I will keep fighting until the day no one has to go through this ever again. I want to live in a world where people with disabilities like us can grow up proud, unapologetic, and embraced with the same enthusiasm as any other. You were not and are not lists of medications, sleepless nights, or burdens like some have suggested. Your names are Olivia, Max, and Ben, and you are people. People who had so much left to contribute to the world, had you been given the chance. I pray that one day we will all be together in Heaven, where I will give each of you a big hug, and remind you how glad I am that you once graced the planet. Sleep tight, little ones, I love you so.

Check out these great individuals with SMA living beautiful, meaningful, WORTHY lives.

Dear New Family

More Than Pretty Pictures: The Media As A Reflection of Social Perception & What We Can Learn From The Felix Awards

I have mentioned this issue before, but in a media saturated world, I think this message bears repeating. The way that people with disabilities are portrayed in the media matters. They may seem like simple pictures, memes, paintings, posts, and movies to you, but they are more than that. They are a reflection of my reality. They are the ideas that tell people who will never meet me or someone like me what to think and how to treat a person with a disability. If people are disabilities are not included in the media at all, it tells those whose only exposure is through these sources that people like me don't matter enough to even appear in works of fiction, never mind it real scenarios.

These portrayals honor or shame my way of life, and too often, they shame. They present stereotypes and exaggerations as the truth, and the truth is usually taken out of the hands of the group to which it belongs…. That is, the people with disabilities themselves. That is the fundamental problem with consistently offering roles of disabled characters to people who do not actually have disabilities, which has been called "disability drag". Then will come the media storm about how the actor, non-disabled of course, looked so authentic, so poignant, and almost made us believe that he was “one of them”. The fact is we are not characters to be played by those seeking praise for putting on a costume and mimicking us. For every nondisabled actor who receives the role portraying a person with a disability, I assure you that there was a person with a disability anxious to portray his or her own truth denied the opportunity. And the disability drag game continues, the praise and the awards continue for “looking so real” as if there are no “real” disabled people left to tell their own story, or we are too exotic to be found in the present day. If you are looking for a real dinosaur to cast in the role of himself, I understand the need for mimicry. But people with disabilities are not a fossilized population whose story must be resurrected by others for lack of first-hand accounts. We are still here. Our history is still being written. We are past. We are present. We are future, and we are capable of representing our people.

I would perhaps be less bothered by the concept of disability drag if people with disabilities looking for acting roles had the opportunity to turn the table and go able-bodied to get a job. But the fact is, we don’t have the ability to walk or move or ditch our wheelchairs for the sake of a role, and no matter how good we are at acting, we will never be chosen for a role intended for an able-bodied actor is our disability is visible. Thus it is rather difficult for an actor with a disability to get a meaningful part given that the available roles are so limited, and then what they do appear, they are often given to a person without disabilities lauded for doing such a good job imitating us as if we are no longer alive to live, not imitate, the disability community.

But that aside, the portrayals themselves reflect the misinformation still circulating about us. Still, most of the disabled characters are either superhumans or pity objects awash in self-loathing. Media makes people who are invisible in society visible, and when the only truth made visible is a stereotype, the attitudes that pity object or super cripple are the only shoes we can ever fill are allowed to continue. It is true that some people with disabilities may have sad lives, but this is not the only aspect of our story that exists. Just like people without disabilities, our lives are happy and sad, and simple and complicated, and joyful and frightening and hopeful and uncertain, depending on the day. Yes we suffer sometimes, but so do many people without disabilities. As I've said before that's not the nature of life with a disability, it is the nature of life.

 Fortunately for able-bodied people, they are portrayed so frequently that one experience is not extended to the entire group. But people with disabilities are portrayed so infrequently that the few times they are will be used again and again to make assumptions about an entire group. That is why characters with disabilities and people with disabilities need more time on the screen, in the books, in the magazines, on the TV shows in varied storylines that represent life on the full spectrum of human experience. This is especially true for television shows and books directed at children, who are both our most impressionable minds and the minds of the future. If we change the way they look at us now, perhaps when they grow into adults, greater strides will be made towards acceptance and not misconceptions. Perhaps kids who have disabilities will more often be able to identify someone who looks like them in their storybook and feel proud to be disabled instead of ashamed or afraid. For every Forrest Gump doing extraordinary things, meeting famous people and running across the country, for every Colin from The Secret Garden wallowing in bitterness on the other end of the spectrum, there are people with disabilities in every nook and cranny in between, seeking and living ordinary lives, that embody just another variation of a diverse population. They are mothers and fathers, friends and sisters and brothers, teachers, and students, far both from becoming a superhero and becoming a tragedy.

In my travels in cyberspace, I was fortunate to connect with the folks at Extreme Kids & Crew in Brooklyn New York, an organization that focuses on recreation and acceptance in safe spaces for people with disabilities. This year, they will be giving out the first Felix Award, which strives to do exactly what I have been discussing. To change the perception of what it means to be disabled today, and honor those who use the arts as a vehicle for change.

They state that, “While living 
with disability and caring for those with disabilities is no picnic, neither is it the gloomy tomb it is often
made out to be. Indeed the challenges, pains, frustrations, and injustices associated with disability can
lead to creativity, resilience, humor and novel ways of perceiving the world. Much of the disconnect
between what disability looks like from the outside and what it feels like from the inside has do with
misunderstanding and inexperience.”

 What a beautiful place, or more beautiful place, I should say, the world could become if more people in the arts and in the world understood this, and honored the Felixes of the world in a way that treated their lives like the varying stories that they are.

Or as EK&C so eloquently put it, if they “moved the general public’s perception of disability away from 
fear and loathing towards a more nuanced wonder at the
multiplicity of being and the diversity of experience.” I think wonder is just what we need, wonder at how lucky we are that all people are different. Different not less. Wonder that will allow kids with disabilities and their families to look around and know that they don't have to be afraid because the world wants them to grow up proud.

            The arts are an amazing and peaceful tool to start sculpting that wonder for future generations. Your pens and paintbrushes and pencils and crayons are not just mundane objects. They are those things that can give a message to the world, that can construct a person or a group as important or unimportant, visible or invisible. They are those things that can give people with disabilities power, and quietly but mightily reshape the way society sees us. They are the method we have to preserve our truth when one day we are gone as individuals, and all that remains are the renderings we have left behind to tell our stories. When the history of my people is told, long after I am gone, I want the world to have an imprint of my life that goes beyond a stereotype. Artists, use your instruments well. Whatever you bring forth with them will tell our children what to think about people with disabilities and have a direct impact on the thousands of children with disabilities shaping their self image in a world too often not made for them. Make your choices carefully, and use those instruments for good.

Check out Extreme Kids & Crew's Felix Awards at http://extremekidsandcrew.org/news/introducing-the-felix-awards/

Access Denied: The Curious Case of the Becky Doll As a Misfit Toy and Its Real-Life Implications

Becky Doll Article

I mentioned not long ago in a previous post that children with disabilities have few options when they are seeking toys that look like them. This seems like a silly thing to be worried about, but think about it. The products available on the market reflect what we as a culture find important. For underrepresented groups who may not be visible to many, the images on the market are often the sole exposure that some have to such groups. When certain identities are excluded from something as simple as the toy business, it’s a reflection that they are excluded from society, and deemed unworthy to be made visible.

Furthermore, toys are for children, and children’s minds are those that can still be shaped. When we have no dolls or other toys with disabilities, our message to them is implicit but undeniable: people with disabilities don’t matter, or at least not enough to be brought to your attention. This was the case with Becky, Barbie’s friend with a manual wheelchair. Becky, formally called “Share a Smile Becky” was selling well when she was released in 1997. Then, a 17-year-old girl with cerebral palsy pointed out that the “Barbie Dream House” was not accessible to Becky. Instead of redesigning the house to help accommodate her, Mattel made a choice that is the embodiment of the real-life struggle for people with disabilities. Becky could not fit into the house or many of the other Barbie accessories such as the car. But no “ADA compliant dream house” followed. No car with a lift hit the shelves. Becky was simply discontinued.

That choice is reveals the unsettling truth that even in the doll world, people frequently can’t be bothered to make structures accessible. This thinking blames the disabled person for being different, for not fitting the expected mold for the “normal body”. The real problem lies in the fact that the structure was designed to accommodate one type of person, when in reality, people are from many varying paths of life. It is troubling that even as the increased consciousness about diversity reaches the media, people with disabilities seem on the outskirts of even the diversity discussion. If Mattel did not care to create a world where Becky could remain part of the product line, what does that tell children about the need to be accommodating in the real world? Children who play with toys eventually become adults who build homes, write laws, draft policy, and hire employees. When we don’t give a disabled doll a place in their imagination, our hopes of them giving a place to disabled people in their real world sharply decline. The reality is that too many people with disabilities face discrimination in housing and public accommodations. The barriers they face look eerily similar to Becky’s, and the lack of access to “the dream house” becomes a sick metaphor for the continued prevalence of ableism in the world.

The case of the disabled toy that was not worth the effort to accommodate translates into the adult attitude that inclusion should not be valued. This attitude shifts responsibility for access away from society and makes disabled people, not their second-class status, the problem. If there is a place to start with changing hearts and minds, that place is with our children, who have the power to unlock a future that is better, brighter, and more loving for all people. If people with disabilities belong on their TVs, in their stories, and reflected in their toys, they learn that people with disabilities belong in their communities. The issues are much bigger than the Becky doll, but finding a place for her in games of pretend and Barbie tea parties is a start to creating true equality.

People with disabilities are real. We are here, and we are not going away. Becky was discontinued, and that should make you think about how much value we place on the real-life people Becky represents. I was the child, and I am the adult, for whom Becky was rendered. I am a person, and my identity cannot and should not be discontinued. Disability rights matter, and they truly exist when they are embedded in our cultural practices. My rights matter, and when you take all that reflects me out of the public consciousness, you effectively take me “off the shelf”. Think about that, and change your attitude, because unlike Becky, I will not accept a quiet exit.

CP Awareness Day and The Cure We Should Really Be Seeking

Today is National Cerebral Palsy Awareness Day. I am supposed to be wearing green to support my people, but ironically enough, I am wearing red. Despite wearing the wrong color today, I think my signature palsy hands are a good enough indicator that I am celebrating today, seeing as one of them is nearly always stuck in the air like some kind of celebratory flag. Today, your social media newsfeed will probably be exploding with encouragement to “wear green- and stand up for a cure!” or a similar message accompanied by a smiling child “fighting this ‘disease’”. Let me be clear about something. Today, I need a cure. I need a cure, but it’s not the one that you think. Cerebral palsy has been part of me for my whole life. It’s impossible to separate us, because so much of the person I am has been colored by my disability. I know that it will continue to shape me as I grow older. So, no, please don’t spend today crusading for a cure for my CP. Spend today crusading for research and information on a topic that is overlooked and underfunded… the eradication of pity.

Pity has made certain people second-class citizens. Pity has made beautiful children who look different think they are ugly. It has deceived a society into thinking that acceptance applies to some and not others. It has allowed those who do not know our truth to call our lives not worth living. Pity is completely curable, but it relies on a willingness to invest in its end. We must give people with disabilities meaningful work and education. We must teach society that access is a right and not a privilege. We must bring people with disabilities onto the big screen and into our books in ways that lift us up, not make us into curious objects designed to accompany the crescendo of a slow, maudlin song. If we did these things, cerebral palsy would not scare society so much, and so many people would realize that they were fighting the wrong battle. They would realize that the enemy on which they should focus their fury is not cerebral palsy, but instead the inequality and stigma automatically attached to those who have it.

Today, on March 25, 2014, I will hope for the same thing I hope for everyday. I will hope that one day, people will welcome a child with cerebral palsy with the same love and joy given to any new arrival. I will hope for schools, workplaces, shopping centers, parks, and hospitals that genuinely welcome us out of kinship rather than legal obligation. I will hope that the world will see me as someone with a good life, in spite of and because of the disability that literally and figuratively sculpted my brain twenty- one years ago.

Don’t get me wrong. I don’t enjoy having epic spasms or becoming a palsied ice sculpture at the first indicator of a breeze. If there are ways to mitigate the more painful physical aspects of CP, I will welcome them with arms open as wide as my range of motion will allow. But don’t think the desire to treat a few nuisance aspects of CP means that I wish to “get rid” of CP itself. That would require a restructured identity, and I am at peace with my identity as it is.

If I did not have CP, people have said over the years, I would still be the same person. However well-intentioned that thought is, it’s just not true. I would lose the way my hand pops up like a creeping relative in every photo. I would lose the way my legs kick out when I’m so happy to see a friend, and the tighter than tight way I wrap people in a hug. I would lose the joy of eating soup by straw to spare my clothes, and the near-guarantee that someone I know will be seated in the same section of a concert hall. These may seem like quirks to you, better off gone, but quirks are those things that make us who we are. If we lose our quirks, we lose ourselves, and that would be a devastating loss.

Today, I ask you to be brave. Seek a new cure. A cure for pity. It’s a cure that’s so easy to find if we work together. It’s a cure that doesn’t lie in the hands of the world’s most brilliant scientists. It doesn’t grow in a petri dish. It grows in homes, schools, churches, and playgrounds… in little acts of real, honest inclusion. It grows in each of us, and it has the potential to be the advancement of our generation. How amazing it would be to discover it… as scientists, as teachers, as moms, as dads, as brothers, as sisters, as nurses, as doctors, spouses, scholars, and friends… as people. Wear green today, and seek this cure with me. But you don’t have to stand for it, sitting is cool too.

 If you're not too busy celebrating with a game of Limpo or Startle the Tail Off The Donkey, check out www. curepity.org to see an amazing campaign that has started the fight.

I Am Not A Scare Tactic: Talking Back to the "Don't Drive Stupid" Campaign

The media is at it again. Pretty pictures are pretty pictures, right? Wrong. They are a reflection of what the public really thinks and a reflection of how those who do not yet know what to think about a topic are supposed to think. This time, the wheelchair user is being used as an object of pity again. The media is manipulating society's fear of disability and using it to cast those who have disabilities into a place of ultimate shame. For rehabilitation class, I was assigned to interpret any media image about people with disabilities. It sounds easy and it sounds like something I would do instead of watching Netflix or eating bonbons. But when the assignment was in my lap, I was having a lot of trouble making up my mind, knowing that there were just so many options. When I asked for help on Facebook identifying a good bad or ugly portrayal, my sister dug a gem from the murky depths of cyberspace. And by a gem, I mean one of the worst portrayals I have ever seen. It's been a while since a media image of a person with a disability made me viscerally angry. And then the Internet gives you something to write about.

The infamous picture is from a Utah teen safe driving campaign called Don’t Drive Stupid. It encourages teens to avoid risky behaviors such as drinking and driving, drugged driving, and texting and driving. The message is good, but the way it was delivered should make its creators incredibly ashamed. The poster depicts a boy seated in a manual wheelchair with downcast eyes and the caption reads:  “Drive stupid and score some kickin’ new wheels. Nothing’s cooler than the day you get your driver’s license. But as soon as you start driving stupid, it’s not so call anymore. Texting, using your Ipod, racing, they all fall under the category of stupid. And dangerous. So before you get behind the wheel and try to prove how cool your are, here's a little harsh reality: Nothing kills more Utah teens than auto crashes. Not fazed? Okay, how does the thought of spending the rest of your life in a wheelchair grab you? Look, every year far too many Utah teens go from cool to crippled in the blink of an eye. So if you're one of those drivers who think they have something to prove, you can start shopping for your wheelchair now. And hey, if you think that's harsh, wait until the day you roll it into school."  

Take a moment to process that. Are you banging your head against the desk yet? Let me be clear. I am not advocating for risky behaviors and I am a big fan of educating people about driving safely. What I have a problem with is the absurd idea that being disabled is the worst that could happen to a person. If you drive dangerously, you could DIE. You could KILL SOMEONE. Those should be the harsh realities. When you use lives like mine as a scare tactic, you deepen the divide between us. You prey on people’s fear of what it would be like to be me, and surround people who use wheelchairs with shame. You prey upon teens’ vulnerabilities, their desires to be cool. The subtext is this. You want to fit in. You want to be cool, but you won’t be, if you’re in a wheelchair. The message suggests that when you roll into school, the natural consequence is that you will be bullied and ostracized. And if it’s the natural consequence, then the message between the lines must be that we get what we deserve.

Disability or not, regardless of its cause, nobody deserves to be isolated, bullied, or treated as less than. The inclusion of life in a wheelchair as the doomsday scenario, and the omission of death as the ultimate fear factor leave the reader with a basic perception that disability is worse than death. When that perception is allowed to permeate our culture, part of my spirit dies. I am disabled, and I have challenges. But I refuse to see my life as a tragedy.  Most of my challenges arise from the callous manner with which my life is dismissed, devalued, and belittled by others. I am alive now, and if you someday become like me, the world will go on. You will find a way to embrace your new normal. Not everyone will be kind to you or know how to see you with an open mind. But some people will be so kind, it will bring tears to your eyes. And it will become so clear who deserves to have a place in your heart.

If you based your worldview on this ad, you would also conclude that one cannot be “cool” and “crippled” at the same time. I’ll let you in on a little secret. You can be both. A disability does not deplete your ability to be liked and loved. A cool person is a cool person. Period. End of story.

So, teens, kids, adults, seniors, don’t drive stupid. Be safe, but don’t be safe because you’re afraid to be like me. Don’t be safe because you think the world will crumble if you roll into school in a wheelchair. Be safe because you’re not dead yet, and the world needs you. Be safe because there is no name for a mother who has lost her child, only a great emptiness where words fail. Be safe because you’re ALIVE now with so much left to do. Be safe because I love you, more than you know.

Image description: The poster depicts a boy seated in a manual wheelchair with downcast eyes and the caption reads:  “Drive stupid and score some kickin’ new wheels. Nothing’s cooler than the day you get your driver’s license. But as soon as you start driving stupid, it’s not so call anymore. Texting, using your Ipod, racing, they all fall under the category of stupid. And dangerous. So before you get behind the wheel and try to prove how cool your are, here's a little harsh reality: Nothing kills more Utah teens than auto crashes. Not fazed? Okay, how does the thought of spending the rest of your life in a wheelchair grab you? Look, every year far too many Utah teens go from cool to crippled in the blink of an eye. So if you're one of those drivers who think they have something to prove, you can start shopping for your wheelchair now. And hey, if you think that's harsh, wait until the day you roll it into school."