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What a Jerk: Disability and the Right to Criticism

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Through my work at Disability Rights Iowa, Iā€™ve had the opportunity to meet hundreds of my disabled peers. I have meet inspiring, courageous young people with disabilities and Iā€™ve met outright jerks. Iā€™ve heard people with disabilities speak passionately and lovingly about their challenges, and Iā€™ve heard people with disabilities speak from a place of hatred or even prejudice. Unfortunately, the public at large is all too eager to ignore our flaws and allow these missteps to go unchallenged, more comfortable in the assumption that we can do no wrong. Parents allow their children with disabilities to mistreat them, writing off their behavior as an inevitable consequence of their individual needs. Pastors have made similar mistakes, seeing the joy of a disabled child as somehow a miracle, as if a child enjoying life should be impossible inside a disabled body. This toxic mix of reduced expectations and the canonization of the disabled experience is profoundly harmful.

Just as people with disabilities have the right to self-determination, dignity and safety, we also have the right to be seen as fully realized human beings. To be recognized as a full person means facing the consequences of our behavior, or being rightfully called out. We have the right to learn from our mistakes, and that requires peers willing to push back and challenge our flaws. A right to our own measure of imperfection. Anything less is a trap, and just another expression of the dehumanization of people with disabilities.

We must be held to the same social standards as our non-disabled peers, and to be given the feedback all people need to better themselves. Much of what people with disabilities do is admirable and worthy of praise. But when we are perceived as somehow pure, or immune from the flaws all people share, we become irrevocably severed from a key part of the human experience. People with disabilities are pushed into tired, inaccurate clichƩs, painted as cherub-like pictures of self-sacrifice, perfect pillow angels whose flaws are few and virtues endless.

In eighth grade, I suffered a great deal. I was bullied constantly, in chronic pain, and living with the same social isolation so many young people with disabilities face. My peers kept me at a distance and rarely took the time to get to know me. But one girl in science class was different. Her name was Ashley and we were science partners for the better part of a year. Forced to work together, she really took the time to talk with me, get to know me, and shed the presumptions that my disability carries with it. She saw me as a full, complex person and what she saw, she hated. Ashley made an effort, saw me for me, my talkative, bubbly, smug teenage front on full display and thought I was insufferable. I can never thank her enough for it. It was only after I was seen, and my self-centered perspective really critiqued that I was able to start looking past my own suffering and see how my actions affected those around me.

People with disabilities are not innately warm or joyful, wise, kind or even friendly. We can be petulant little brats, or selfish and cruel. Our experiences can numb us to the suffering of others and stunt our growth as people. We can be intolerable martyrs or manipulative opportunists. Examples are common enough. A dwarf making an unwelcome crude joke, trusting it will be tolerated because of his size. A blind man using his disability and perceptions about his limitations to justify copping a feel, abuse disguised as accommodation. We play the fool, taking advantage of our cultureā€™s reduced expectations, to be the loud mouth at the bar, free to harass knowing no matter what happens we canā€™t be physically confronted. We can be instigators and we can be the bullies.

Not all assumptions or caricatures of people with disabilities are on their face negative. We face reduced expectations or outright hatred and discrimination, but we also stomach the cloyingly sweet presumptions about our own inherent benign existence. Cast as we are as an inspiration, or an angel, or an adorable sexless cupid, it is all too easy to begin to disbelieve in our own capacity to do harm. We are taught too often to live selfishly, to seek our comfort above the needs of others, or abandon our social responsibilities. Disability becomes in itself a virtue, and simply enduring the experience is seen as an accomplishment, where even subjecting us to justified ridicule is treated as taboo. The impact of our immunity can be seen in spaces made up primarily of the disabled or neuro-divergent. In spaces created to welcome and organize the autistic community, autistic women frequently experience constant pressure from their male peers. Enduring either incessant flirtation to outright harassment. Women and non-binary young adults looking for community find an aggressive, unwelcoming dating service. To complicate matters, the line between disability and personal failing is rarely distinct.

Disabilities can create barriers that present at first glance as moral flaws. A well-organized person can be made absent-minded by medication, an active adult made to appear a couch potato by the limitations of their chronic fatigue. It is an important part of inclusivity to acknowledge these experiences. But the inverse can be true as well. People with mental illness can still be abusers, and people with depression can be cruel. Those with developmental disabilities can cause discomfort by unintentionally missing a social cue, but sometimes it is due to misogyny, or by discounting of the feelings of others. Every person with a disability has used it to excuse their mistakes, guilt-trip their peers or cashed in the worldā€™s greatest rain check. Sometimes we use it as a cudgel simply to get our way. Sometimes despite all appearances to the contrary, we are doing our very best. As a naturally lazy person, even I canā€™t always tell where the significant limitations of my disability end and my own personal flaws begin. Life must allow for these complexities, these muddled lines. It has to be possible to see a person within a broader context, and still expect better of them.

Criticism is not always a negative, nor is protecting the disabled from that criticism to our benefit. It can serve a valuable purpose, ridicule not of a personā€™s identity but of their actions and choices. Criticism is an opportunity to do better, if we miss out on being criticized, how can we improve? Part of human dignity is not just affirmation, but the dignity that comes with being held to account. The dignity to be called a jerk for acting like one, reminded as necessary of the un-kept promise of the person we were meant to be. People with disabilities must do a better job of calling out our peers behaviors in a loving and empathetic way, and the able-bodied community must have the courage to take a step back from their own assumptions, and give all people the same opportunity to change for the better.

The 28th Anniversary of the ADA

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As a young boy, my mother brought me to Iowaā€™s capitol to celebrate the 10th anniversary of the ADA. It was a typical Iowa summer day, hot and humid, but the grounds were abuzz with excitement. For the first time, I saw people with disabilities of all kinds, together, reflections of one another despite our differences, gathered to celebrate all the progress that had been made in 10 short years. The event was an outpouring of joy at what we have achieved. An opportunity to express our gratitude to Senator Tom Harkin who authored and introduced the ADA, Senator Grassley who supported its passage, President George H.W. Bush who signed it, and to all those who helped to make the ADA a reality. It was a day Iā€™ll never forget. Beyond introducing me to a law that would play a huge role in my life, it was an example of my mother teaching me to celebrate my disability, to celebrate my peers, and to never forget that my disability made me who I am, a person worthy of love and respect.

Once signed, The Americans with Disabilities Act became, as Senator Harkin often terms it, an emancipation proclamation for millions of Americans with Disabilities, and an all-important inheritance for the generations to come. For me, the ADA is a collection of legal protections that have proved essential throughout my life. Without it, I would not have graduated high school, I would not have met my wonderful friends at Drake University and I certainly would not have my job at Disability Rights Iowa. Every stroll through Valley Junction, every note of bluegrass enjoyed at the Iowa State Fair, every afternoon retreating to the cool of a movie theater with my sister on hot summer days are all memories made possible by the ADA.

I am a proud to have come of age in a post-ADA world, shaped by its indelible impact. As member of the ADA generation, I was allowed to grow up with the belief in my own value secure. A belief that my future was not restricted by my disability, but limited only by my talents and determination. Should I doubt that truth, I had a document with the signature of the President of the United States confirming my value as a person.

The Americanā€™s with Disabilities Act affirmed our immeasurable value and sought to bring about full participation in society. At the time of its passage, the ADA was radical, expansive and ambitious. Reading it, you canā€™t help but appreciate that its authors were attempting nothing less than the total removal of the societal constraints imposed on the disability community. It addresses everything from employment to educational access, curb cuts to captioning. Its very existence is a testament to the political strength of people with disabilities and their allies. It exists because of the efforts of millions, a nationwide cry for full citizenship, and for long overdue protection from systemic discrimination. As its scope and full meaning was supported by the courts, it became a means of moving away from the institutional approaches to care, towards true inclusion and choice.

Twenty-eight years later, the enduring legacy of the ADA continues to transform this country, and level the playing field for millions. For 28 years, our society has opened itself to people with disabilities in ways previously unimagined. This change allows members of the ADA generation to dream and succeed because of the unique gifts of their disability, and not in spite of them. People with disabilities are reshaping a world that is hostile to our very presence, and we are what we always knew ourselves to be: A natural and essential expression of the human experience. We have come a long way, achieved much with the help of our families, communities and allies. We must be proud of and celebrate our successes.

But even as we allow ourselves a moment of celebration, we must turn our thoughts to those unrepresented here this afternoon. Today, a young person with a disability will spend their time throwing plastic toys into a bag. Their future counted in cents by the hour, their ambition and talents stunted by a culture of lowered expectation. Another will spend their day in bed, with filthy sheets and festering sores, unable to receive the services essential for their dignity and safety. Another still will struggle to maintain their independence in the face of mental health challenges and crushing stigma, working against institutionalization. Our failures to fully make manifest the promises and protections of the ADA have severe human consequences.

For too many Americans, the ADA is not yet a reality. The transformation that so affected my life for the better remains for many a half-filled promise. This is a collective failure. Yet, the failures of yesterday do not dictate our future. Today, let us not just celebrate the achievements of the past, but the fact we have within ourselves the capacity to bring the ADA to all those in need of its protection. Is this a challenge? Absolutely. One we are well equipped to meet.

If neglect and prejudice persist as a form of institutional violence, then let empathy become a form of institutional love. Let our policies, practices, and minds be shaped by the higher principles of inclusion and self-determination so central to the ADAā€™s purpose. Today we celebrate how far we have come, and the hard road left to travel. The march goes on, the march to define and defend what Justin Dart Jr. called ā€œa landmark commandment of fundamental human morality.ā€ Everyday a powerful and new affirmation of our rights as Americans, and the unique beauty of the disabled experience.

Today is our celebration. Tomorrow, we get back to work.

Olmstead: A Declaration of Independence

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This Fourth of July, Americans will come together to celebrate our independence and the incredible patriots who made it possible. But those patriots were not just wealthy landowners in powdered wigs. Patriots come in all shapes and sizes. They are found on our battlefields, in the backs of buses, or in the hallways of a nursing home. They are anyone who holds in their heart the values of independence for all and insist on making those values central to the American experience. And two such patriots helped to provide the independence for a generation of people with disabilities

This month people with disabilities celebrate our own landmark of independence, the Supreme Courtā€™s Olmstead Decision. Two women with mental health challenges had long sought to live and work in the community, and were continually denied that opportunity. Forced to living in a hospital setting despite these wishes, they went to court and fought for their right to receive government services in a setting of within the community, a right to the essential supports that allow people with disabilities to live lives of their choosing. Such a decision is what allowed thousands of Americanā€™s with disabilities to leave nursing homes, and live as fully independent members of the community.

As we celebrate our independence this week, we must take the time to think of the millions for whom it remains is an elusive, unreachable goal. Take time to acknowledge those who remain needlessly segregated and restricted in institutions, live under unnecessary guardianships or even feel just by being a person with a disability that their choices are less important. Independence was won by those who came before us and must be won continually, an evolution which will allow our nation to one day finally embody the lofty principles on which it was founded.

But we also have time to be thankful for how far we have already come. To think of those brave women who made the Olmstead Decision possible, and in doing showed as a way to our independence. People with disabilities and our nation made better for their bravery.

Our Rights are not up for Debate

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Since the mid-thirties, the Fair Labor Standards Act has created exceptions for people with disabilities that allowed them to be paid sub-minimum wage, often amounting to pennies on the dollar. Arising from this system grew a network of segregated warehouses, where people with disabilities would do mind numbing, simplistic labor, a practice which many are surprised to hear is still utilized through much of the United States. Today in Iowa, thousands of people with disabilities are segregated from their peers, warehoused away and exploited, all while ‘providers’ receive funding for the invaluable ā€˜work trainingā€™ being provided. Even as many work to dismantle this antiquated system, others seek to push for change without daring to speak truthfully about the damage sheltered work has dealt to generations of disabled youth.

Many disability related organizations worked together throughout early 2018 to prepare and release a large guide surrounding the transition from sub-minimum wage to community employment. Their efforts were important, and came from a desire to meaningfully improve the lives of people with disabilities. However, their most recent handbook, despite its overall high quality, elected to paint the continued existence of sub-minimum wage as an ongoing debate. Entitled The Great Debate, the handbook goes out of its way to avoid challenging the moral rot at the center of Americaā€™s sub-minimum wage laws, painting the end of sub-minimum wage as a needed evolution, as opposed to the end of a long tolerated moral evil.

Within disability advocacy, we have room for diplomacy with those with whom we disagree. But diplomacy does not mean ignoring discrimination and segregation when itā€™s perpetrated against the vulnerable, or validating the choices of those who should know better. The Great Debate is a fantastic resource, and a persuasive indictment of sheltered workshops. Yet despite the quality of its content, the title allows for the presumption this issue has two sides. It doesnā€™t.

Sheltered workshops were never good, they were never effective, and they were never anything other than a brutal form of segregation and exploitation. I offer no gratitude to those who ran them in the past, and I am not appreciative of those who run them now. Well-meaning intentions are not good enough when they are paired with willful ignorance. Allies are not helping when they segregate our young people, deny them the basic protections of labor laws, and subject them to decades of dehumanization. I would no more debate these facts then debate my own innate right to dignity.

In my work with disability rights, I have often come into situations with strongly held moral beliefs concerning one disability topic or another. Often, as I dive into the complexities of a subject, lines blur and my moral certainty gives way to a more fully realized appreciation for the topic. I meet individuals on all sides, and come to see an interconnected network of systems that resist easy categorization, giving nuance to my views on guardianship, independent living, and disability justice. These continued realizations are an all too familiar part of working at Disability Rights Iowa. But in the case of sub-minimum wage, the same scenario does not apply.

With every policy studied, every workshop visited, every consumer interviewed, Iā€™ve gained a greater appreciation for the consequences of sheltered workshops and an ever lower opinion of those who inflict segregated employment onto a vulnerable population for their own organizational stability. Sheltered workshops are wrong. This is not a debate.

Empowerment

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Representation is important. That fact is apparent to nearly all members of marginalized communities. To see yourself reflected in the culture in which you live is a validating thing, especially for young people, and Iā€™m glad to see our heroes beginning to reflect the diversity of the American experience. Empowerment begins sometimes in simple ways, with children of color leaping around as Black Panther, or young girls flying around as Wonder Woman, punching the bad guys into orbit. Yet, as those children age they need to be able to look into the real world, and see not just a collection of amazing adults with disabilities on their screen, but adults with disabilities in positions of power, shaping the world around them.

The disability community has benefited in countless ways from the advocacy efforts of able-bodied allies and advocates. But as allies in positions of prominence within the disability field retire or new positions are created, it creates an important opportunity, a chance to address one of the most common criticisms levied by disability advocates outside the non-profit field. Namely, our failure to sufficiently address concerns of representation, or establish prominent national leaders with disabilities or mental illness.

While many organizations in the disability field boast a diverse and inclusive workforce, they often make little effort towards securing disabled leadership at their highest levels. Despite the rhetoric, this inaction mirrors much of the toxic paternalism that has entrapped generations of disabled people. When those in the disability field elect to ignore this disparity of power, they fail to keep pace with the impact of their own success. To forgo fostering disabled leaders is to risk missing out on a generation of talented, dedicated adults with disabilities and mental illnesses, individuals raised under the protections and heightened expectations of the post-ADA world.

As a person with a disability, and as a professional who intends to dedicate my life to working alongside disability organizations, I expect that movement to reflect the community I hold central to my identity. This is only possible when people with disabilities hold positions of power and prevalence. In the past, ā€˜Nothing about us without usā€™ was sufficient, even radical, in its call for the inclusion of disabled voices. But we need to demand more than a seat at the table. We must remind our allies whose table it is in the first place.

The able-bodied have historically failed the disability community, and even the best intentions have left lives destroyed. In segregating us, evoking the threat of police violence, or sustaining systems which ensure people with disabilities languish in poverty, the able bodied have long since taught disabled people the importance of self-advocacy as a form of self-defense. It is no wonder that we have begun to favor leaders that reflect our community, and have experienced firsthand the human consequences of ableism. We should not apologize for distrusting a majority that has shown itself to be unworthy of that trust, nor calling for leaders who reflect our experiences. True allies donā€™t just stand in support of the marginalized. They also step aside when asked, and the time to ask is now.

Through their staffing choices, disability organizations model to employers across the country how to view inclusion. Nearly every mainstream non-profit dedicated to combating systemic oppression for select groups take it as a given that its leadership should be reflective of that group. The very idea of doing otherwise would be laughed off as absurd. When Rachel Dolezal was outed as a white woman leading a NAACP state chapter, she was almost universally rejected, and her qualifications to be chapter president were called into question. Yet, every day, advocates for people with disabilities purport to speak for a community of which they are not a part, and whose cultural language they do not speak. When a white majority speaks for people of color itā€™s rightfully questioned, all while the Rachel Dolezalā€™s of the disability world are celebrated. We must reject the idea that able bodied representatives are the main spokespeople of the disability community.

Within the disability community, we are conditioned to accept the presumption that we lack the professional capacity or experience to produce capable national leadership, all while national leaders without disabilities are all too often treated as trusted stewards, growing the movement for their disabled friends. What a profound waste. People with disabilities are a minority group with a long cultural history, tremendous ability and a wildly underutilized reservoir of talent. We are lawyers, doctors, parents and programmers. We have found success in every profession, even while so many of us are underestimated.

Even if the disabled community truly does lack the capacity to lead the disability rights movement (an assumption I donā€™t for a minute believe), the failure at least will be ours. Better our failure then paternal success. We will not be spoon-fed our rights, or given only glimpses of national power. To accept less then direct control over our own revolution would be to disrespect the efforts of all the amazing advocates who came before us.

So, mindful of the incredible history of the disability rights movement, and the inherit capabilities of those with disabilities and mental illness, we must demand the following from all organizations who proclaim disability justice as a core element of their mission:

  • Recognition of the failures of disability organizations to secure leadership that reflects the disabled population or place them in positions of power internally.
  • Commitment from all levels of the organization to embrace the cultural expectation that organizations will strongly prefer qualified applicants with disabilities for managerial positions, with quantifiable goal of a minimum of 50 percent representation of people with disabilities in leadership positions by 2030.
  • A commitment to build skills and leadership qualities within staff with disabilities, giving self-identifying staff with disabilities or mental illness the structure and tools needed for professional development.

Far too often, the disability community has been harmed when we feel forced to prioritize the feelings of our allies over our own voices and needs. This cannot continue. While we will always endeavor to be kind, welcoming and empathetic to those from all backgrounds, our goal must first and foremost be to create a space for people with disabilities and mental illness and establish a strong base of political power. In demanding greater agency over the national disability rights movement, we do credit to the amazing advocacy that made such an expectation possible. People with disabilities will lead the disability rights movement. The only question is if our allies will have the courage and conviction to follow.