Autism

Happy Sad Clowns: Redefining Success in Comedy Through a Disability Justice Lens

A drawing of a black microphone on a stand against a light pink background.
Posted on by Nik Narain

CONTENT NOTE: mentions of suicide, eating disorder, and substance abuse. Reclamation of ableist phrase.

Before I was formally diagnosed with AuDHD, a psychiatrist told me there was no way I could be autistic because I was a regularly-booked comedian. According to this medical professional, autistic people “couldn’t be funny.”

This sentiment confused me for two reasons: 1) did this psychiatrist realize just how not-funny they were? And 2) has this psychiatrist ever met comedians? You’re telling me that monologuing about your observations and interests to a captive audience of people you don’t have to make eye contact with is a neurotypical activity?!

I found stand-up at 18 as I was simultaneously coming into my queerness, transness, neurodivergence, disability, and newfound independence as an adult. Open mics at bars and local clubs became my second home where I met folks of all ages, cultural backgrounds, and life experiences. I not only felt validated but celebrated for my personal brand of “crazy.”

I met other awkward and painfully self-aware outsiders who never quite fit in with our communities. It was the first time I met queer, neurodivergent, disabled adults living the kind of beautifully messy creative life I dreamed about.

I started comedy as a sheltered and deeply suicidal college student in need of community and an outlet. Within a few months I found myself a regularly-booked act and even became an open mic host, interacting with dozens of comedians a day. In my final year of college, I wrote and filmed a one-hour stand-up show, toured that show around the country, and produced several events in my city. I even got the incredible opportunity to open for some big names. And I loved every moment of it. 

There’s the adage that “laughter is the best medicine.” But, there’s also the reality that many comedians rely on self-medication to survive in such a grueling industry, whether it’s drugs, alcohol, self-loathing, or denial of burnout. I didn’t know I was dealing with the effects of Long COVID and other chronic illnesses at the time, but I did know that the more I tried to embody the romanticized comedian hustle—hitting up multiple open mics a week, exhausting my social battery in the name of schmoozing, skipping meals and sleep for the sake of “the game,” etc.—the sicker I got.

Unfortunately, I got to a point where I was sick all the time, chronically lost my voice for a year, went through a major eating disorder relapse, and, somewhat thankfully, expedited my diagnoses of fibromyalgia, hypermobility spectrum disorder, and PMOS.

I hate how readily we associate the trope of a comedian with hyper-independence, profound loneliness, and grinding to the point of exhaustion, which starkly contrast principles of disability justice. If comedy is meant to be an act of creating collective joy (out of literally nothing but sounds and vibes), why do we expect comedians to be so miserable, and often glorify it?

Disability representation in comedy is not just about booking more disabled comedians (although that’s very important!), but about dismantling the ableism ingrained in our idea of what it must take to be a comedian. Comedy is an art form that especially attracts us neurospicy, anxious, marginalized folks who finally have a chance to be heard, which makes it all the more disheartening how quickly we accept comedy as a business that decimates our emotional, financial, and physical well-being. It not only makes the creative practice harder to access, but continues to keep the industry centered on cis-het white male perspectives that I’m frankly bored of.

A lot of people think stand-up is an art form about laughter; I personally think stand-up is an art form about truth. In stand-up, we bend reality through meticulous, intentional narratives to elicit responses of joy and amusement from an audience. How might we experiment with truth-telling to evoke the disabled joy we so deeply need, and so deeply deserve? And how might we dream up our own narratives on how to adequately support, sustain, and compensate comedy-making to truly center joy in our liberatory practices?

Nik Narain (he/they) is a queer disabled South Asian American comedian, science communicator, musician, writer, and visual artist based in Durham, NC. You can find his work at niknarain.weebly.com or on Instagram @n1k_creat3s.

About Rooted In Rights

Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights.

Waiting on Waivers: Nicole

A miniature figure with a hand in their pocket looks over at a miniature house and tree.
Posted on by Nicole LeBlanc

Nicole LeBlanc is one of the over 600,000 people waiting for home and community based services (HCBS). For people with disabilities who need support, home and community based services allow us to live in the community. In order to be eligible for these services, you have to apply to the Developmental Disabilities Administration (DDA) in your state and show that you qualify for institutional care, but would like a waiver to receive services in the community instead. When Nicole moved to Maryland, she had to reapply for eligibility to receive supportive services like cleaning and organization, budgeting, and medical care. So far, despite reapplying and receiving application support, Nicole has been denied the same services they received in another state.

Nicole’s Story:

My name is Nicole LeBlanc. I live in Silver Spring, Maryland. I’m 40 years old. I’m on the autism spectrum. I’ve worked in the disability field for 19 yrs. I’m a policy wonk. My areas of expertise are in disability employment, social security, medicaid, poverty, long term service supports/ home and community based services (LTSS/HCBS), person centered practices, systems change, redesign, legislative advocacy, and health equity. I’m a die hard Red Sox Patriots fan. I’m the oldest of two siblings.I got diagnosed with autism at 21 during a traumatic experience at Grafton Job Corps. I’m often known as the “budget watchdog” and “guardian of inclusion.” People often describe me as the most outspoken critic of the system.

In August 2016, I moved to the DC region/Silver Spring, Maryland, from Montpelier, Vermont for the Paul Marchand Policy Internship program. There, I interned with Kim Musheno, my mentor and role model at the Association of University Centers on Disabilities (AUCD.) In Vermont, I received HCBS services, but eligibility doesn’t transfer between states, so I applied to the Development Disabilities Administration (DDA) in Maryland. 

I have applied more than a dozen times since I moved here in 2016 and keep getting denial notices. I’ve had major crises, Social Security Administration (SSA) overpayment, being scammed, health ailments from severe COVID in 2021, and urinary tract infections (UTI’s) that lead to frequent emergency room (ER) visits. From 2020 to 2021, I experienced housing instability. I moved into a month to month where someone would move in one month and then leave without notice, leaving me on hook for someone else’s rent. I also struggle with adaptive functioning in areas of cleaning, cooking, computers, day to day problem solving, budgeting, and inability to prepare for or handle invasive medical procedures without substantial support. 

Giving someone like me a $30,000 HCBS waiver would save the government money in ER and urgent care costs and lead to better health outcomes. I’d also experience less stress and trauma with a stable support system that keeps me out of crisis. One thing that stands out in the dozen or more DDA denials I have gotten is they say “the applicant has many independent living skills that permit him/her to live independently and the documentation does not support [Intermediate Care Facility] (ICF) level of care.” Even though I live in an apartment, I’m not necessarily functioning 100% independently when it comes to tasks of daily living, budgeting, dealing with public benefits paperwork like a Social Security Disability Insurance (SSDI) work review, navigating the healthcare system in dealing with chronic ailments from COVID.

In my ongoing battle to get DDA HCBS I have worked with staff I know at Seeking Employment, Equality, and Community (SEEC) who I met when I worked at DDA as an Advocacy Specialist from 2017 to 2020. I have also sought help from Disability Rights Maryland, to no real success. Most recently Karen Lee, SEEC Executive Director, referred me to Deborah Fisher who has her own business focused on helping people with complex cases get into the system. I’ve also had numerous psychological evals done by Minder Memory and a local psychologist to get more testing in order to make the case that I actually meet the criteria for HCBS. My strengths cover up a lot of my deficits. When you meet me you might assume I have the skills to thrive independently outside the system, which is not true.

In the meantime, I get three hours every other weekend from a private duty Director Support Professional (DSP) that Makom sends me a bill for every month. It gives me staff to help with organizing, and being taught how to cook a turkey. On top of that I rely on SEEC pro bono staff support from Steve Blanks, who is the Director of Partnerships. Steve helps me out every time I have a crisis, with bureaucratic paperwork like medicaid review, SSDI work activity review, fixing my printer, tech issues, installing ink cartridges, and more. Everytime I need a bunch of stuff printed I send it to Steve. Right now I’m waiting for another DDA redetermination decision to come back. I resubmitted my application with an updated in person evaluation and adaptive functioning assessment. I also included letters of support from my medical team and friends. 

Nicole’s Recommended Policy Changes: 

Changes I would love to see made at the state and federal include but not limited too:

1. Making HCBS an entitlement. It should be an entitlement to live in the community and not in an institution or nursing home.

2. Eliminate IQ tests as a criteria for HCBS eligibility. IQ scores do not reflect the adaptive functioning challenges many adults with low to moderate support needs deal with on a daily basis.

3. HCBS should be portable state to state. If you are eligible in one state, like Vermont, you should be automatically eligible in another state like Maryland, or Colorado for example. HCBS portability would save time, money, and stress when moving to a new state. If the government used the same eligibility criteria in all states it would be more efficient and offer people a better quality of life long term.

4. Investing in a proactive HCBS system of care that focuses on the prevention of crisis rather than waiting for crisis to occur. This would reduce acute healthcare costs and ER visit usage. The system would be focused on keeping folks healthy and out of crisis. Studies show people with autism who don’t get HCBS have more ER visits than those that do. 

5. Supported Employment. Job coaching should be an entitlement. The lack of access to job coaches is a big reason why adults with autism struggle to get, keep, and advance in their jobs or careers. I’m one of those people who could benefit from long term support. Lack of long term job support is at the heart of why people with autism have high rates of unemployment and underemployment.

6. State Plan Medicaid should pay for personal support for people with autism and intellectual and developmental disabilities (I/DD) who are not at risk of ICF level of care.

7. Allow people with disabilities to buy into HCBS just like we buy into Medicaid for workers with disabilities.

8. Expand SSDI, SSI work incentives to include deducting the cost of in home support across all life domains for workers with disabilities.

9. Eliminate asset and earnings caps so that we can work more and hire DSP’s to support us in the community.

10. Declare people with autism and intellectual and I/DD a medically under-served population. This would go a long way in eliminating health disparities and achieve better health outcomes at lower costs.

11. HCBS access for all can reduce acute healthcare costs by ensuring that our medical needs are met, in terms of diet, lifestyle and prevention of illness.

Nicole LeBlanc is a Dr. Ruth Sullivan policy fellow, self-advocate, and consultant on disability policy and disability employment. As a 2018-2019 Self Advocacy Resource and Technical Assistance (SARTAC) fellow, Nicole created guides and toolkits for self-advocates to advocate for real jobs for real pay, such as “Why Employment Matters, Tips for Speakers and More.”

About Rooted In Rights

Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights.