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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 ‘work training’ 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 America’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 it’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 doesn’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, I’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 I’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, ‘Nothing about us without us’ 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 don’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 it’s rightfully questioned, all while the Rachel Dolezal’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 don’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.

I’m glad to be a Platypus.

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I love the platypus. I have ever since I was a kid. When stuffed platypi were first brought back to England from Australia, they were rejected as fakes. Bad fakes even, obvious attempts by desperate amateur zoologists seeking a bit of fame. How else to explain a ducked billed otter with webbed feet, barbed venomous tail, with egg laying that would put a chicken to shame? The very concept of such an animal was comic, and many professors felt insulted that they were even to be expected to believe such nonsense. It was to be rejected on its face, an oddity not in keeping with the splendor of Gods design. God made wolves, lions, and bears. Majestic true expressions of nature. They couldn’t believe God’s plan had room for the undignified, or comic, or bizarre. And certainly not a duck that thought it was a beaver that thought it was a hen. In time, though they were proven wrong of course, and forced to reckon with its place in God’s great plan. They would struggle to categorize such an animal, and marvel at just how unlikely it was that such a creature could exist. The irony being, of course, that the miracle of the platypus is not a freak accident, but that its evolutionary path was almost inevitable.

Australia is a unique ecosystem. Home to countless species which persisted, grew and changed in perfect isolation from other continents. Distant cousins became more distant, as generation after generation of animal changed, adapted, and grew to fit the harsh, new landscape in which they found themselves. Asked to do the impossible, they rose to the task. Through natural selection they grew pouches, venom sacs, bits and barbs. Dogs became dingoes and the platypus found its bill. In isolation their perfect, sensible remedies took shape. In such a place, the platypus simply made sense. Every adaptation was sensible and correct. But plucked from its home and history, it became painfully different. Plagued by those unable to see that the platypus is a genius of adaptation, an absurd, wonderful answer to an absurd, wonderful world.

And so are people with disabilities…

We are odd. We are neurotic, or closed off, or jeez JUST SO SENSITIVE. Cruelly distant, or trusting to the point of self-harm. Thoughtless dolts, or outright jerks. Our gait too wide, our voices too high or low, skin pop marked, or pasty white. Our bodies and minds constantly accommodating a world often unsuited to our needs, pumping out a seemingly random assemblage of tawdry ‘quirks,’ human wants, and pronounced, inexcusable flaws.

And divorced from the history of our community and impairments, not a bit of it fits. Not our beautiful, infuriating faults. Nor our courageous expressions of self-care, or protective behavior, or learned guardedness. The realities of disabled life sometimes necessitate bodies and behaviors that seem out of place to the ignorant. To some, we will simply never make sense. But we have a lesson to learn.

A platypus doesn’t need to justify its own existence. A platypus knows what it is, and what it is about. It was there before the ignorant scientists pulled up on shore, and it will be there long after they are gone. Invariably appreciated by those willing to practice some careful study. It is adorable, full of eggs and a treasure born of adaptation. Proud of every step that made it what it is. I love being a platypus and I love the disabled community. All of us a remarkable, irreplaceable discovery, miracles of distance, persistence, and time.

Should I disclose my disability in a job interview?

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This blog references an individual opinion based on personal lived experience of the writer. The information contained within this blog is not legal advice by or on behalf of Disability Rights Iowa.

I work at a law firm for people with disabilities, a law firm that does trainings in every corner of the state. We are continually presented with questions essential to those living with disabilities, and we do our best to address those questions directly. If we can leave our audiences a bit more confident in the protections they have as people with disabilities, we have done our job. I love answering audience questions, and they are important, thoughtful…and frankly sometimes predictable. Does this building need a push plate? Do I have the right to an accommodation, to a comfort animal, to demand a new supervisor? Am I in the right?

We try to answer carefully and responsibly. I speak from my experience as an advocate and investigator. The legal team shares the important duty of looking at protections offered by the law. One question we get consistently has to do with disclosure. Should I report my disability to my employer? In discussing the American’s with Disabilities Act, this is perhaps the most popular question we receive. Nervous job seekers rightfully want to ensure they afford themselves all necessary projections, while never exposing themselves to discrimination without cause. Answering this question is a presentation all on its own, with caveats, asterisks, and all the asides that usually come with these questions. But as an advocate, if I were forced to dilute the answer down to its simplest form, it might look like this:

Title I of the Americans with Disabilities Act is designed to ensure people with disabilities do not encounter discrimination in any phase of the employment process, whether it’s in applying for or working in a position. The law requires that employers interviewing candidates ask only if the candidate can fulfill the essential functions of the job with or without reasonable accommodations. Once you establish you are capable of fulfilling those functions, no further discussion should be expected unless you, unprompted, CHOOSE to raise issues surrounding your disability.

If your disability is not readily apparent, it might make sense to hold off on disclosing until you have the job offer, even if you are confident you’ll need accommodations. This is to protect you from an employer withholding the job offer simply due to prejudices or assumptions surrounding your disability. While denying someone a position based solely on a disability is a violation of Title I, it’s difficult to prove after the fact. Once the job has been offered however, Title I of the ADA entitles you to many additional protections, including a right to an accommodation. The general rule of thumb we offer to those with invisible disabilities is to not disclose in the interview process, but to then disclose during employment should you at any point require accommodations. If you as an employee do not require accommodations, it may make sense to never disclose and thus avoid exposing yourself to potential stigma and discrimination.

While this is not legal advice, nor is it comprehensive to every situation, it does offer a safe, sensible approach to the question of disclosure, one that I would readily adopt if my disability was less immediately apparent. As a person with a disability myself, I know firsthand the fears that can come with the interview process, particularly if the need for eventual accommodations is likely. Every person has the right to decide when and if to share their disability with their employer, or anyone in their circle. Not all people with disabilities will come to the same decision and that is okay. What is important is that all people with disabilities know their rights, and the unique protections offered by the Americans with Disabilities Act.

To learn more about the ADA as it pertains to the interview process, visit: Enforcement Guidance: Preemployment Disability-Related Questions and Medical Examinations

The Iowa Caucus: an exercise in privilege

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The Iowa caucus is a beloved statewide institution and for good reason. I remember my first caucus at 17. I was wildly excited, passionate, and eager to present myself as a thoughtful political junkie wise beyond his years. I gleefully joined in the good-natured ribbing and cajoling central to the caucus process. It was exciting, and I felt privy to a unique expression of our state’s sense of community, history, and folksy charm. At its best, it was like a snapshot from a simpler time. Rockwellian Democracy in practice. The caucus is a charming part of our state’s legacy, and once every few years, it places our state in a position of national prominence any state would envy. The Iowa caucuses are special and they are also inexcusably, fundamentally wrong.

As they currently exist, the Iowa caucus is an exercise in privilege. They are inaccessible to the working single mother, and the low income college student holding down two jobs. The caucus is inaccessible to the time poor, those without transportation, the elderly and the disabled. Often marginalized people need the protections and support of the government the most. They are the voices heard little and valued less. Even excluding the attendance requirements, the caucuses are crowded, loud, rowdy setups which preclude participation for many on the spectrum, or whose mental illnesses make public engagement an emotionally draining activity. Breakout groups established to discuss candidates or platforms make planning with microphones for those with hearing disabilities nearly impossible. Extensive documentation that can’t be accessed by adaptive technology often utilized by those with visual disabilities or platform procedures that fail to take any disabled population fully into account make the process even more inaccessible. A bloated, bureaucratic tangle of needlessly complex systems discourages participation and prevents clarity. The issues go on and on. Beneath the folksy image is a broken system that actively excludes huge populations within our state. The caucus and its faults persist and they are for me personally hurtful.

I have the hips of an aging Golden Retriever, and arthritis that would make an octogenarian wince. Yet I am expected to roll the dice, and hope my chronic pain issues align with a caucus schedule. Should my disability prevent my attendance, then it is simply written off as a price of the caucus system. I do not accept that. In February, the dice didn’t roll my way. I was unable to attend the Iowa caucuses. The nature of my transportation and the limitations of my disability made physical attendance impossible. It did not matter that I am deeply passionate about politics, or that I was eager to support my chosen candidate. My physical attendance was compulsory, and that prerequisite excluded me from my political party, and from having a political voice.

This is the 21st century. I can play video games with a friend in Beijing, order shoes, and watch an entire season of Stranger Things without moving an inch. We have all the means in the world to create an accessible system. Yet we do not. In fact, we barely have begun to flirt with remote caucus options that, even if adopted, would only scratch the surface of these issues. Why? Because Iowa is first in the nation. That affords leaders in both major parties a unique position of power, made kingmakers on the national scale. Relevant only as long as our place is maintained, and our caucus unchanged so as not to lose our place. Revealing that state parties are all too willing to accept the disenfranchisement of Iowan’s with disabilities, individuals with mental illness, the elderly and working poor for the sake of preserving familiar structures of power. Values of inclusivity and true democracy are giving way to the allure of nepotism and prestige.

Traditions that discriminate against large, marginalized populations are never quaint and they are not a point of pride. They are shameful and merit change. Last month, I was denied the right to vote in my chosen party’s future because I am a person with a disability. This state’s political parties had the means to facilitate inclusive participation policies, and elected instead to preserve the status quo. For this and a hundred other reasons, the caucus must end and in its place, a multi-day, remote and inclusive system of participation must be created. Because by preserving our spot as first in the nation through the active exclusion of thousands, we prove ourselves unworthy of the privilege. We must change and should that mean the loss of relevance for those who willingly silence the marginalized, I say all the better.

“Ward” and the responsibility of language

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The words we choose and why: This post does not make use of person-first language. This is a purposeful choice. To learn more about why many members of the disabled community elect to refer to themselves as disabled, visit: The Significance of Semantics: Person-First Language: Why It Matters

I was reminded this past week working at Disability Rights Iowa of the importance of language. Of its utility to make manifest in the world that which we believe and aspire to be, and the harm it can cause when left festering in the past. It was for perhaps this reason I was not shocked to find that the term “ward” is still the terminology used in Iowa code surrounding adults with guardianships in Iowa. A Dickensian holdover from an earlier time, such language simply does not have place in modern understandings of guardianships or disability. Yet, here it remains, shaping a new generation’s understanding of the concept of guardianships.

The evolution of a term like “ward” is incredibly old and complex, with early understandings born in part from the divine right of kings, and the perceived sacred duty of the monarch. Paren’s Patriae, literally the “parent of the nation” morphed over time, establishing the role of wardships in caring for the state’s most vulnerable. The powers of the petty king over their petty kingdom are emboldened with the presumption of benevolence. In that sense, the word is shockingly inappropriate. No better analogy could be applied for the worst impulses to be found surrounding guardianships. The sticky sweet, poisoned honey that is paternalism.

The word ward is a hopelessly antiquated view of the guardian relationship, and the role people with disabilities play in society. It suggests a familiarity with disabled people that does not extend past Tiny Tim. People who have never lived disabled lives, had disabled thoughts, or loved disabled people, their courage, curves and eccentricities. It speaks from a place of willful ignorance, both of my disabled family and the ways in which mechanisms of power are utilized. People with disabilities are not wards, nor are guardian’s kings or queens.

Guardianships are not about restricting choice, but empowering the individual to enter into a universe of choices safely. They do not exist to serve egos, preserve familiar family dynamics into adulthood, or undermine a person’s right to a fully explored sexual identity. They are not a tool of the petty despot. Guardianships if utilized correctly are a tool of empowerment, offering people with disabilities safety and supports while allowing them to make lives of their choosing and enjoy the dignity of risk. Clinging to antiquated and dangerous terms like Ward distract from the true purpose of guardianships, and their role in creating a more integrated and open society for people with disabilities.

Paternalism, as directed towards disabled people, is a form of violence. A cinder block thrown from an overpass is no less dangerous if thrown with good intentions, and its consequences no less brutal. Words flung carelessly from the height of privilege tend to come crashing down on marginalized people first. They hit hard, snap bones and destroy lives. Those who might view this as hyperbole have never been on the receiving end of the simple violence of discriminatory language, and the means in which they shape perception.

My disabled brothers and sisters are not cherubs, angels, or lost lambs in need of care. We are not your wards and we demand empowering, minimal and individualized guardianships. Words shape the world in which we live, give it context, contrast and texture. They are the marrow in the bone. In matters of law, procedure or best practice, they are invaluable in mapping out the society in which we hope to live, language loftier then our current grasp. We will be talked about in terms of our own choosing, because those terms dictate the very conditions of lives. Those in positions of power owe it to themselves and the people they serve to use words with care, embracing self-reflection and working always to empower the marginalized. And for those unwilling few, the disabled community is more than happy to provide them some words of our own.

Purpose vs. Power: Parens Patriae and Agency Self Interest

The Check The Checkered Career of Peer of Parens Patriae: The State as Patriae: The State as Parent or Tyrant?