On Pity and Helicopters

 As someone with a disability, I’m somewhat routinely given things. People pay for my coffee, my meals, sometimes they go out of their way to help me in one way or another for no other reason then my  wheelchair. One of my more distinctive childhood examples of this random charity was of a wealthy Iowa tycoon whipping around in the movie line, getting on one knee and asking my mother “Has this little guy ever been in a helicopter?”  Absurd? Undoubtedly. Yet there I was a week later, circling the downtown skyline, making a memory that will last me the rest of life. I’ve had a professional poet buy my family a computer, Shriners lug me across the country, and flirted with beautiful women far beyond the reach of my charms. Pity, sympathy, and genuine empathy all irreducibly combined made those experiences possible, and shape the way I interact with the world. But it goes beyond that. I’d wager pity plays a role in most of my interactions with able bodied people, to one degree or another. Contrary to lots of my disabled peers, I’m okay with that. Because pity, flawed though it may be creates the possibility of the new.

If I’ve noticed any constant within the disabled community, it’s that people with disabilities almost universally loathe pity. It is treated, in many ways rightfully so, as an antiquated, patronizing mentality that so dominated able bodied perceptions of disability for generations. The Medical Model of disability as discussed in Disability Theory largely draws off pity, perpetuating the idea that the disabled have to be cared for and cured.  Contrarian though I may be, I’m not about to argue against the belief that pity politics has long inhibited honest national discussion on disability. However, I remain skeptical of those with disabilities who view pity with disgust, if not outright vitriol. I similarly reject the idea that pity is a purely ablest reaction to disability with no redeeming elements. Connecting to others is one of the more daunting tasks laid upon those with disabilities. It’s profoundly challenging, to impart our struggle and the nuance of our daily lives to those with no grasp of it. Our lives, our experiences, even our bodies are often so decidedly alien that we need every path to empathy we can find. Pity I believe is one such path, and I believe that it, as deeply flawed reaction as it, is contains a kernel connective possibility.

I remember once a small kid came up to me, hesitant and clearly with something to say. He looked at me with a sad little look on his face, and asked if I was okay. It took me a moment to figure out that he saw my chair and had assumed I was in some horrible accident. In his young mind he associated wheelchairs with illness and injury, and figured he would check up on me. I assured him I was fine, and gently explained my disability as best I could. He mulled things, looked at me worriedly and asked quite sincerely if “it hurt”. That gave me pause, and I decided to be honest. Yes, I said. Yes it sometimes hurts, sometimes it hurts very much. But that’s not true for all people in wheelchairs, and I was in college and had a great life. He seemed relieved, if still slightly concerned for my safety. Brief as our conversation was, I like to think our talk left us both for the better. It was as incredibly sweet as it was misguided, and almost entirely the product of pity of a sort. The young boy felt sorry for me, and reached out. From that connection, he left better understanding my life and I’d like to think the lives of all disabled people.

I truly believe that pity is ultimately born out of love, a love for people and a genuine caring for others well being. It’s twisted, misguided, and often used to disastrous effect, but I believe to be at its center the product of human kindness.  And because of that worthy center, I believe it can be appropriated to do incredible things. People who pity me are one sharp shove away from empathizing with me, one short conversation away from changing fundamentally the way they view the disabled. It’s a profoundly short leap, and one I saw made by that young boy. Pity opens up the possible, a deeply flawed thing that can be transformed into something truly wonderful. In that way it’s not unlike disability itself. As a person with a disability, I use the tools that are offered me, and ride the helicopters within my reach. I follow human connectivity as high as it will take me, and will remain thankful for the opportunity.

The Saving Grace that is the New

I’m not ashamed to admit last month I was scared out of my mind.  In March of last year, I began what turned into one of the more transformative experiences of my life. As someone who had long dreamed of working in disability advocacy, the internship was everything I could have hoped. I grew as an advocate, employee, and most importantly as a human being. But, my time as an Intern flew past faster than I could have imagined. Fall turned to winter, and my internship ended. I was stuck, terrified of falling into a trap, caught again in a menial job so far removed from my passions or skills. I had a glimpse of a life I would never have dreamed possible, and all too abruptly that window closed. It was a difficult transition to say the least, and one which I did not weather well.  Thankfully, as has so often been the story of my life, I was given yet another incredible opportunity. Jane Hudson, Executive Director of Disability Rights Iowa gave me a call, and offered me a position at her wonderful organization. I was ready to say yes before the end of her sentence, let alone knowing the full extent of what my work would entail. In many ways it didn’t matter. Here was an opportunity to do what I’ve always wanted, to work in service to people with disabilities. As I did finally familiarize myself with the specific goals and objectives of my grant, I’ve become even secure in that I’m exactly where I belong.  And so….I’d like to share with you my new job and all that it entails, if for no over reason then I’m a terrible braggart.

People with disabilities are taught to be fearful; that I think is an undeniable fact of living in an ablest world. The disabled are taught to fear those who hold our safety and dignity in little regard, to fear the sharp decline, violence and neglect, the exhausting pull of poverty and institutionalization. We save and we save, knowing full well what awaits us if our body fails, and our family is not present to catch us. People with disabilities are observers of the world, and we note sometimes with bitterness our place in it. We do not forget the pallor of the shuffling wards of Willowbrook, we remember every crack in the aqua paint on the Attalissa bunkhouse. These abuses inform our expectations; they force the sensible among us to fear all the vicious realities that plague people with disabilities. They are in fact inescapable, made worse by the endless chorus of reduced expectations, patronization and the constant dictates of a maddening bureaucracy to which we are subjected.  As our society molts away the prejudices and misconceptions that have so dominated thinking on disability, these attitudes will become more and more rare. Yet, for the moment they persist, thus limit the choices for thousands of disabled Iowans. That lack of choice nearly made me forgo the internship that led to this job.

It is not difficult to recall my feelings as I moved into employment for the first time. I am after all simply a year removed from the experience.  It’s a tremendously scary thing, seeking out a job when you have a disability. People with disabilities often spend years building a system of supports that allow us to live our lives. Social Security is a large part of that support, it being the first taste of income many of us ever get. I remember distinctly my first month controlling my social security check. It was incredible.  To have money is to have choices, and I was not used to such a luxury. Social security along with a small minimum wage job got me my current apartment. That small level of independence is one of the major sources of joy in my life, and social security was essential to making it possible.  Working beyond those few hours at a movie theater seemed foolish then, even outright suicidal,  it felt like I was compromising my ability to live as a full adult by even considering it. As much as I wanted the paid internship position at DRI, I thought doing so would totally erode all the services I needed to be independent. Thankfully, I decided to risk it despite serious reservations, and was shocked to ultimately discover that my Social Security wasn’t going to just disappear. Due to work incentives, I was able to work and draw funds for a few months as I got settled, and made sure I would be able to rise to the work required of me. That eased transition made me feel employable, and secure enough to leave Social Security behind. Still, to think that such fears could have kept me continually chained to Social Security Disability is a sad thought, and I’m so happy to now be able to dedicate myself to alleviate such fears from others in my community. Mine is an incredible job, and a unique chance to help others avoid the struggles I encountered on my road to employment.

Starting this past week, I’m a new advocate at Disability Rights Iowa, working under the PABSS grant. Its purpose and scope is clear. I work for the protection and advocacy of beneficiaries of social security, helping to empower individuals as they work towards meaningful employment. Over the next year and a half, I will be educating the community on work incentives, helping connect individuals with benefits planners, and help to hold accountable the many institutions that have been established to find meaningful work for people with disabilities. More than anything else, I hope to become a comprehensive resource for people who are eager to become full participants in their community. That alone would keep me busy, but I’m also a part of a larger project of which I’m incredibly proud. Iowa is a bit behind the times when it comes to integrating people with disabilities into employment. Unfortunately, the model of the sheltered workshop is all too common, the non-profit which segregates people with disabilities and pays far below the minimum wage.  It’s a holdout from a much darker, less opportune time for people with disabilities, and its evolution towards a modern method of vocational support for the disabled has been as long one. As a part of my work, I’ll be able to explore these workshops, learning along with PABSS Attorney John Gish the ways they operate, hearing the stories and experiences of their disabled employees first hand. It’s enough to make your head spin, yet the marriage of advocacy and direct service appeals to me.  I have before me the chance to support the dreams of others, to learn from the experiences of people with disabilities in all lines of work, and earn a wage and benefits that offer me a security far beyond what I am accustomed. I am used to being afraid, as are many of us. And so, as long as this haven lasts, I must work as hard as I can to usher others to a security all their own. To do less would be to ignore how very lucky I have been, how lucky I remain, and the countless others who have been denied the opportunity that has been afforded me.  Thanks to everyone at DRI for their work.