An open letter to a “We” Mother.

During my time as a PABSS advocate, I have had the privilege of meeting dozens upon dozens of parents of young people with disabilities. They are and continue to be a professional inspiration, and certainly one of the more formidable collections of people I’ve yet to meet.  Parents of young people with disabilities are a hardy bunch, hardworking and often of singular purpose. They give years of their life to tackling all the challenges that come with disability, work tirelessly to empower their children, and provide them with every support imaginable. That dedication and active manifestation of love is a privilege to see, and I would never wish to diminish its importance in the lives of young people with disabilities. After all, one such parent’s dedication is the reason I have the opportunity to even write this blog at all. It is because of my gratitude to that unique group of parents that I feel compelled to comment on a trend I’ve observed within the parental community which I believe to be rather dangerous. It is all too common and unintentionally cruel, as it disregards the dignity and right to agency all people with disabilities demand. And it is that trend I’d like to explore today.

When I talk with parents, I invariable note that some will use “We” in reference to their child’s achievements and activities. Johnny joined the football team becomes “we became a member of the football team this year”.  Jill applying for colleges becomes “we applied for colleges”.  It is I must say a particularly distasteful twist of language, and one which I believe carries with it some unsettling insights into the parental perspective. Before however I get into why I find that particular use of “we” so distasteful. Particularly, I believe because it is so far removed from how my own parents referred to me and my disability. The bellow is not directed at every parent who has ever used “we” in reference to the life of their child with a disability. The occasional use of such language is totally understandable and probably unavoidable as a parent supports his or her child as they deal with the challenges of adolescence. I write instead to the habitual users, those parents who seem determined to tie their lives and their sense of self to every accomplishment their child achieves. It is to those parents I write the following and to the mother of a young woman I met some time ago who described her daughter’s life entirely in a chorus of “We”.

Dear We-Mom,

 
“We” are not disabled. Decades of help, guidance, and love though essential to our success, does not give you leave to appropriate our lives and our experiences.  I am disabled. Your daughter is disabled. She and I have lived, worked, and endured under the shadow of social prejudice and discrimination for the duration of our lives. As close as you may be to your daughter’s daily struggles, you are but on the periphery of what is a vast and often incredible difficult personal journey. Life with a disability is a complex thing, and one I continually fail to fully grasp though I have lived with it my entire life. Your love, and your work as inspiring and essential as it may be, gives you no way to know her experience beyond that of a loving mother’s empathy. No more then she could know the special heartbreak of seeing a daughter she loves subjected to pain and social isolation. Your struggles are each your own, intertwined perspectives of human experience.  Do you find the disabled experience so simple, so without complexity or nuance that you would effortlessly adopt it? It is not yours. You have no claim to it. You have not earned it any more than your daughter earned the right to tell you the nature of motherhood and the special terror that comes with watching your children fall or fail.  What is left then is to speak as you would of any of your children, taking pride in their accomplishments, holding for them an expectation of success.  As you have observed her struggles, her failures and fundamental triumphs so much you recognize she has long since earned the right to hold her life in her own hands.

When your son proposes to his longtime girlfriend, do you tell your friends “we” are getting married? When your daughter breaks her ankle playing soccer and has it repaired do you inform friends and family that “we” need surgery? If not, then you must ask yourself why. Why do experiences and lives of your other children stand apart, when your daughters must be by necessity extensions of your own life? If the answer is ego, ask yourself if you hold your own sense of self above that of the daughter you have so diligently raised. If it is fear, then realize there is a dignity and unique worth in personal failure and your daughter deserves both in equal measure. Either way, I ask you to please take note of the impact your language and your attitudes inform your daughter’s sense of who she is to be. 

You may feel an impulse to mark down such verbal distinctions as largely irrelevant in the face of the vast challenges your daughter faces. Resist such a notion. There is no higher mark, no greater goal for a young person with a disability then to feel fully realized, to feel human when faced with the inhumanity of neglect and mistreatment. It is that all important feeling of pride and self-assuredness you undermine every time your language attempts to conflate her life and wants with your own.

As a young person with a disability, your daughter is subject to a barrage of messages telling her she is worth less than her peers, that her dreams and person are not needed in this world. I’ve experience such a barrage of negative messages for much of my life, and the only remedy I’ve found is to live a life of my own choosing and my own doing. Though I may get supports, though I may lean heavily on family and friends in times of need, I can take an incredible satisfaction from knowing for better or worse my life is my own. To use “We” in your language and in your thinking is to mute that all too necessary joy. And so I would ask you this:

Appreciate your daughters drive and accomplishments, as you are a key element of support that made those accomplishments possible.

Acknowledge her unique challenges and ambitions, and allow her the special kind of growth that comes with failure.

Realize that though you must and should take pride in all that you do as her mother, that your daughter deserves to discover a pride all her own.

Refer to of her life as you would her brothers and sisters, and allow her magnificent life to speak for itself.

To that, I believe, is to do justice to all that you have given her.

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.

A Moment of Appreciation

Over these past few months, I have been the beneficiary of an incredible program. Jim Dejong, Director of the ADA Great Plains Center believed in a need to train the next generation of disability advocates, this in addition to his desire establish a greater working relationship with Disability Rights Iowa was the impetus for my internship position.  Everything bellow was made possible by his foresight, dedication, and willingness to provide the means for this opportunity. 

**

Eight months ago, I was ripping tickets in a movie theater. A recent college graduate, feeling dejected and unsure of how to proceed, this internship presented me a path into a career I had always aspired to be a part of. I applied, never wanting anything more in my life. When I was called in for an interview, I was elated. Three hours after I left the interview, I was called and told the position was mine. I’m still unsure how I could have been so fortunate. This internship has allowed me to support myself to a degree I would have never dreamed possible, and provided me an opportunity to devote myself to becoming a better advocate. From the beginning, Mr. Dejong wished this internship to be a sampling of the many forms advocacy which take place in the state, and it has been a unique, and fast paced education. I spent a week shadowing Mr. David Mitchell, leaning from the head of Iowa Vocational Rehabilitation about all the amazing ways they bring people with disabilities closer to full, meaningful employment. I’ve written already of Mr. Mitchell’s invaluable passion and insight, and learning from the head of a multimillion dollar state program was a jolting experience for a lowly intern. I rode on a boat on the San Antonio River, attended the ADA National Symposium and learned from the leaders in Disability Rights and advocacy. I visited a prison, talked with fellow advocates, and worked and learned besides an entire community of lifelong disability advocates. It has been every bit the experience I hoped it would be.

My time with Mike Williams over at the Department of Human Rights, led me to the most meaningful experience of this internship. Staffing and learning from the delegates of the Iowa Youth Leadership Forum was a truly life changing experience, which gave me the ability to truly appreciate the unique and powerful voice central to the disabled community.  Mike is a passionate, dedicated advocate, and it’s his work which has made Iowa’s YLF one of the best in the country. On a personal level, he was incredibly generous with his time, and made every effort to include me in every aspect of his job. Beyond that, his good company, his warmth, and his endless store of affability and desire to help and befriend all around him makes him a wonderful asset to our state, and an even better man. As Mike moves on to his CAP position, the Disability Consultant post will be filled by Ms. Page Eastin. Though I’ve only met Page on a few occasions, I’ve heard from people who I trust and value that she is an incredible advocate and person. My brief encounters with her have all but confirmed those reports, and I simply cannot wait to see to what new heights she takes the YLF program.

I also must thank Heidi Smith, who works organizing several different divisions within the Department of Human Rights. It wouldn’t be an overstatement to say Heidi is perhaps the most universally adored member of the advocacy community I’ve meet. Simply mentioning her name to anyone is sure to incite a compliment for her expertise and kindness. Her incredible understanding of the disability issues, her calming, capable presence, and sheer ability to get things done is astounding. Infinitely busy, but always willing to make time for everyone and anyone, she is a part of what made my time at the Department of Human Rights so special.

I would be sorely remiss if I didn’t take the time to recognize the work of the Organization with whom I’ve spent the majority of my internship. But before I do, I think I need to expand on something that someone without a disability may not understand. My time at Disability Rights Iowa was incredible. I learned a great deal, spent time with wonderful people, and became part of a professional community. It’s that last bit that I was surprised to find so affecting. People with disabilities are rarely offered the opportunity to feel like colleagues, or professionals in any field. We often face condescension, or limited participation in our workplace. But at DRI? I was made to feel valuable, welcome, and an instant member of their professional organization. This meant I was awarded the dignity of being held to a standard, and my input given time and consideration. For a person with a disability, this can be unfortunately rare. And for that inclusion alone I owe them a great of thanks. But…I grew intensely value the work of the people here at DRI, and I can’t pass up the opportunity to introduce and thank them.

Without a great administrative staff, DRI wouldn’t be able to function, and thankfully I was able to work with an amazing collection of people. I want to thank Hope for teaching me how to operate everything from my phone to my email with a seemingly endless reservoir of patience. She’s seems to be good at every aspect of this job, and approaches it a seemingly endless store of positivity. I want to thank Katie, both for her excellent work on the DRI site (for everything she does really) as well as for being cool about me almost accidently bringing a million pound filling cabinet down onto my head. (Though I was sternly if politely banned from coming within ten feet of the cabinet ever again) I’d also be remiss if I didn’t mention my long time office mate and advocate Christie, whose kindheartedness is a wonderful gift to everyone around her, and I will keep her and her husband in my thoughts and prayers. Her work on voting within the disabled population leads us ever closer to being full participants in our government and I WILL one day pay her back for all the Sushi she bought me.

I want to recognize the dedicated and essential work of Advocates, Char and Beth. It is their work that is a key part of putting a stop to abuse and neglect within the Disabled Community and their team serves as a safeguard for those often most vulnerable to mistreatment. The disabled community and I owe this group a tremendous debt of gratitude. More personally, I want to thank Char for being the perfect presentation/road trip partner. I enjoyed her company, and her willingness to dive into new and crazy situations. I’m also thankful for Beth for the inspiration both she and her sons offer our community through their work. Beth for her sheer fearlessness when she knows she is in the right, to her sons for their incredible accomplishment of independence, and the inspiration they offer to other members of the disabled community.

 Disability Rights Iowa has grown tremendously in a very short amount of time. In the past few years DRI has emerged as a leader in disability advocacy in this State. This emergence is due in no small part to Director Jane Hudson and the active, dedicated board whose work moved the organization in new and exciting directions. One of their expansions of course was to secure a fully staffed and talented accounting staff, whose professionalism and dedication enabled DRI to secure all the funding necessary to serve the people of Iowa. As DRI continues to grow, the work of financial director, Linda and head accountant Mark will become all the more essential. It is their management that has enabled DRI to grow in leaps and bounds over the last few years, and sustain its vibrant, growing legal team. Most importantly of all, they are kind enough to pay me money now and again.

  
I wish to thank DRI’s legal staff. DRI is many things, but it first and foremost it is here to address disability related legal needs. The legal staff, in part because of the great variety of legal issues that often come with disability, often ends up with many different kinds of responsibilities. Each attorney then tends to focus on a specific area. Scott focuses primarily on disability and DHS issues, and as a former marine is clearly tougher than anyone in the office by a cool mile. His beard lends an air of dignity to DRI that can’t be replicated. Nathan focuses primarily on juvenile cases and once made the mistake of actually indulging me and talking about disability theory. Poor guy didn’t know what he was getting into. Attorney Janya works for DRI doing all manner of site visits and deals with protecting the wellbeing and safety of Iowans with disabilities. She recently brought a new baby girl Aubrey into the world, and last I saw her she couldn’t look happier.  I know DRI is eager to have her back. I also can’t forget new attorney’s John and Whitney. Though I haven’t had the opportunity to work closely with either of them, I know their warmth and sheer expertise will be a great addition to the advocacy community here in Iowa. Finally, Paralegal Jean helped me learn the inner workings of DRI bureaucracy and turned me into a far more effective advocate, emphasizing at all times that no, I can’t just write “GOT STUFF DONE, MORE MONEY PLEASE?!?!” on a napkin and mail it to the US government.

Both Executive Director Jane Hudson and Head Staff Attorney Cyndy Miller have continually gone out of their way to make this experience a valuable one. Cyndy introduced me to nearly all aspects of DRI work, running me through often complex procedures, and kindly yet clearly establishing the expectations that come with this job. Cyndy is incredibly organized both in her thinking and her work, with a brain that seems continually focused on helping her clients. Her attention to detail and desire to maintain a high level of professionalism at all times is invaluable to an organization like DRI. Unfortunately, she got an Intern who was sometimes widely disorganized, inexperienced, and initially lacking in any understanding of how an office operates. I slowly learned how to make myself of use; and Cyndy was kind and obliging, but more than willing to politely inform me of when I was not going about things as they needed to be done. As the boss directly overseeing my daily work, she has given me a foundation of skills and understanding that will serve me well for years to come. I’m grateful, and I hope I contributed in some way to her work. Cyndy is a central part of what makes this place so incredibly effective and well regarded.

Finally, I’d like to thank Director of DRI, Jane Hudson. Upon Jane’s arrival she, with the help of its remaining staff, turned DRI into a thriving, widely respected organization. On my first day here, I was amazed at the interest Jane paid to the day to day workings. She is an engaged, passionate and knowledgeable Director and it was her encouragement which led to this blog, which has evolved into my favorite aspect of my work here.  Jane has consistently worked to continually improve the value of my internship, and to assist me in any way she can as I begin gaining experience. Perhaps most importantly, she pushes me to succeed and make my mark on a field I love. She fostered in me something new and altogether exciting: ambition and higher hopes for the scope of my future.  I’d be remiss if I didn’t recognize all her work, and the tremendous impact she’s had at DRI.

Every good organization is at its base a collection of passionate people. Before my time here, I was already a fan of the work of DRI, and proud to become associated with this organization upon my hiring. But, it was only as I met the people at the heart of DRI’s success that I could come to fully appreciate its work and the people who make it happen. DRI is a tremendous collaborative effort, an effort bolstered by a staff who genuinely works to serve Iowans with Disabilities. To work in the service of others, regardless of the capacity is an amazing thing. Public service, particularly to those in most need of it, speaks to the best parts of us all. Here is where I owe the greatest thank-you directly to the people of DRI:

I am a member of minority group that has been abused, mistreated, and sometimes relegated to the fringes of society for much of our history. We have been subjected continually to policies of discrimination, and we live with the lasting consequences of social and political isolation. For that reason, I see no fault in stating that we need your help, and I don’t think that it belittles our community to say as much. We need help defending the rights we worked so long to see recognized, help to combat the abuse and horrific violence of neglect. We need people with an incredible intelligence, dedication, and capacity for human kindness to supplement our own. People with Disabilities have found that support in DRI, and I have found it in everything you do. To live and to work in stewardship to others is a tremendous privilege. It is also sometimes frustrating, exhausting, and can go all too unrecognized. Please know that you are appreciated, even by those sometimes unable to express that appreciation. You defend our right to be treated as full, human beings. It is as simple and essential as that. And I don’t think I have the ability to fully articulate just how meaningful that is to me, and the countless others you have served.  It was a great pleasure to meet every one of you, and it was a privilege calling myself your colleague if only for a brief time. On behalf of myself, and all my brothers and sisters in the disabled community you have helped over the years, you have my sincere and lifelong gratitude.  Thank you so very much.