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Send in the Clowns

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Clowns are the worst. In a world with hairy spiders, pineapple on pizza, and the Cleveland Browns, it takes a particularly evil genius to think up something as creepy as a clown. I recognize some people love clowns. I also recognize that some people are wrong. With pale faces, red noses, creepy laughs, and their disturbingly endless supply of scarves, clowns were nightmare fuel for me growing up. Being a young, adorable kid with a significant disability didn’t help, as I was a magnet for all manner of social attention. Politicians always stopped for a photo, mascots always gave me a hi-five, and regrettably, Mall Santa was my shadow and clowns were always determined to “brighten my day” with their unique brand of terror. They would ignore my obvious discomfort, and launch headfirst into whatever shtick they though would get a smile. It was exhausting and unsettling, and I’ve had similar experiences through my work in disability advocacy as an adult.

The people who dress up as clowns or Santa Claus do so out of love for children, and a desire to entertain. It makes them feel good about themselves, and what could be more validating then making a kid in a wheelchair laugh? It is never a bad impulse to want to brighten someone’s day, or do some good for those most in need of it. The problem comes when you get so determined to do good, your particular brand of good, that you ignore the needs and feedback of the very people you presumably want to serve. When your own validation becomes the objective. If the many clowns I met in my childhood were paying attention, they would have seen from my body language and feedback that the best gift they could give me would be to run in the opposite direction. But they never did. They always stayed, painfully determined to be needed, determined to get that smile despite my protests. That is not okay and it isn’t unique to clowns.

For most people with disabilities, we are often at the mercy of our support circle, sometimes harmed by the very people who genuinely want to help us. We are denied access to jobs, relationships, or privacy by loving, overzealous guardians backed by overzealous courts. Young people sometimes never given the chance to fail, grow, and fail again. We are injured accidentally by caregivers who are certain they know what is best for our bodies despite our protests and experience. Our needs are made secondary to someone else’s ego. While these mistakes likely are well meaning, actions taken from a place of kindness still demand self-examination and self-criticism. Good intentions alone are not enough to ensure the supports provided to people with disabilities are positive and essential. True stewardship necessitates being open to feedback and a healthy dose of self-awareness. Above all, it requires the humility to recognize when we are doing harm.

Regardless of the field, we all need to work to live in service to others from a place of empathy, and empathy does not allow for ego at the wheel. Millions have been spent on harmful social services because its proponents were unwilling to consider if they were doing harm, and unfortunately, many make a career of claiming to serve the marginalized even while silencing them. While such extremes are rare, we can all do better. We can work to refocus our efforts on those we serve, on what we hope to achieve for others, and own the instances when we have inadvertently caused harm. To know our audience, and perform from a place of humility. Anything less would make us just another scary clown in an ever more frightening world.

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.