How Can You Support the Disability Community? Pay Us for Our Work.

Part of a check with a fountain pen resting on top.

We all know the struggle of wanting something and knowing you’re unlikely to get it. But when that extends to employment, and more specifically to the employment of disabled people, it goes beyond wanting the unlikely. It’s a matter of impatience for justice.

Recently, I received an email from a well-known disability rights organization inviting me to write a piece on COVID-19’s impact on the disability community. I love writing, and as I experience the decline of control many of us are feeling in the midst of this pandemic, I thought this would be a great way to make my voice heard in a world that is trying its hardest not to prioritize my voice at all. But when I responded to the organization to ask if they would provide a stipend for the authors they were asking to write, they replied that they weren’t offering anything more than social media promotion. How RUDE!

Not only was it rude, but it also highlights the exact problem that people with disabilities are facing, now more than ever. We are fighting to get our ideas heard, our people cared for; our basic needs to be supported; and yet, when asked to contribute, we are not recognized for adding value. A request for a deliverable that does not include compensation is a gift; a volunteer opportunity. It is recognized as effort, but not as value.

This situation is not specific to times of crises. Disabled people are regularly denied fair and equal compensation. For example, subminimum wage is still prevalent (and legal) in the US, feeding into the idea that people with disabilities can be paid less because their identity lessens the quality of their work and their life. Many people who rely on Social Security and Supplemental Security Income disability programs live below the poverty line, because there is a gap in support services where funding ends, translating to subpar living situations and unequal access. Systematic oppression trickles down to pool around our most vulnerable populations. Exploitation of people with disabilities for their work has been going on for as long as time itself and it is time to take back the credit, both literally and metaphorically.

So I am taking back the credit. It is time to draw a line in the sand about what equitable recognition looks like, and to take nothing less. It has always been crucial to pay disabled people for our work. And yet in a world where everyone is struggling–disabled people disproportionately so–we are still being denied having our basic needs met BY PEOPLE CLAIMING TO SUPPORT OUR OWN COMMUNITY. This has to stop now. If we cannot recognize and uplift our own value, who else will? But more importantly, if we cannot recognize each other’s work, we will continue sinking in the ongoing chaos without leverage to rise.

The organizations who are asking for unpaid contributions have the power to be a catalyst for change in this time. If you can set an example of how to treat your community, how to value your community, others will follow, and you will change the landscape for people with disabilities, not just during, but long after this pandemic.


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

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“Tell Me What It Feels Like” – A Disabled Woman’s Exploration of Cannabis

Cannabis in glass jars and spread out on a wooden table.

Editor’s Note: The views expressed in this commentary are solely those of the author. This article is not intended as medical advice or an endorsement of cannabis use. Please consult your doctor before any cannabis use.

There were a few items left on my bucket list, and they weren’t that extraordinary. Items on my list included staying up all night with friends to watch the sunrise, catching a t-shirt out of a t-shirt cannon, maybe kissing someone or two, and trying…weed?

“Ok, so, Lils, what does getting high feel like?”

Lilly had smoked, from what I gathered, numerous times before. She mentioned sophomore year, when she had first started as my PCA (personal care assistant) that cannabis had a completely different effect than alcohol. Three and a half years of college had flown by, and graduation was two months away. It was now or never, I thought to myself.

Growing up, my parents had given my sister and I a sip or two of wine with dinner, starting in our young teens; by the time I got to college, alcohol had been demystified. I wasn’t a fan of being drunk, or even tipsy, as it made my muscles stiffen, and I would get almost an instant headache and feel thoroughly dehydrated. Frat parties and binge drinking were never my scene.

I think in part I wanted to try weed because I wanted to feel rebellious. Sticking it to the man has always been a favorite activity of mine, and I felt like by using this one drug, I would be pushing back enough to scratch the itch. I wasn’t interested in trying other drugs, and cigarettes repulsed me;  I didn’t even think I would like it, but I wanted to try anyways. There were stipulations though; I wanted a private, safe and friendly environment, somewhere we wouldn’t be interrupted. If I didn’t like it, I didn’t want peer pressure affecting my choice. There had to be snacks. We did it on a Friday, so there was no worry of making class or work in the morning.

We mapped it out: Lilly helped carry me into her bohemian bedroom, String lights, mandala tapestry and all, deep in the basement of her on-campus housing. We sat on her bed, me leaning over a pillow, her splayed out behind me, and she pulled out a joint. I hadn’t really smelled anything till that point, but when she pulled it out the smell dropped around me like pine, fresh earth, and strangely, cheese.

“No tobacco?” I confirmed, looking at the rolled paper in her hand.

“No tobacco.”

She lit the joint, took a drag to start it, and tapped the ashes into a ring holder she kept on her bedside table. String lights hung from the ceiling, smoke drifting lazily past. The smell surrounded me. A forest.

She passed it to me, and I inhaled, coughing immediately. My eyes watered and I took a drink to clear my throat. But two more puffs later I had it down, coughing but comfortable as we snuggled. Slowly and then quickly, like a wave coming to the shore to cleanse you, I felt the muscles in my shoulders slowly stop spasming. The bolt of tight muscles in my neck loosened – oxygen and THC flowed to my brain, and for the first time in a long time, I felt no pain. My body felt like it had gotten a full massage, neutral and comfortable with fewer anxious thoughts. I felt alive.

“Is this what able-bodied people feel like all the time?”

Lilly laughed dazedly. “I’m not sure I can answer that, I’m not you. But I don’t feel high all the time as an able-bodied person, if that helps.”

Lilly and I spent the evening laughing and reminiscing on her bed, smoking the joint and eating a full bag of pretzels. She talked about how she wanted to move to Prague after school, and I talked about being anywhere but Maine. Late that evening, or rather, early the next morning, she walked me home, and I thought then as I do now that these are the moments I will remember as shaping the social aspect of my college experience; friends who support you trying new things, and are there for you as you explore the great wide world.

Two years later, in 2018, I applied for my Medical Marijuana Card. I hadn’t smoked in the interim, but more and more information had come out about cannabis, and dispensaries were legalized in D.C. Now, I’m proud to say I know most people who work in my dispensary by name, and I’ve started advocating for the reduction of stigmas surrounding the drug.

As a cannabis connoisseur and advocate, I support exploring the ways in which cannabis may positively affect your life, as well as educating yourself on the strides we need to take as a country to ensure decriminalization, legalization, and creating a path for convicted marijuana users to re-enter and rebuild society.

I honestly think that weed has altered my life for the better. As someone with high medication tolerance and numerous disabilities, cannabis is the drug – the medicine – that has allowed me to become more present in my day-to-day living, more active, and less drowsy as I’ve reduced my cocktail of other drugs.

I continue to rebel against the stigma of a “lazy disabled person who smokes marijuana.” I would encourage others to push past the stigma, because this tool could start a new beginning in your life. (See editor’s note above.) Stigma and peer pressure should not dictate how we take care of our bodies and ourselves. Cannabis makes me a more productive, energetic and flexible individual, as well as reduces my seizures, and I’m proud to be an advocate for a drug that, while it needs more research, has the continued potential to revolutionize the Disability Community, the U.S., and hopefully, the world.

For more information, please tune in to hear me speaking about cannabis on the Accessible Stall Podcast.

For general information about basic cannabis properties, new research and ideas, please check out Leafly’s Cannabis 101.


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

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My Paraprofessional Was Supposed to Help Me; Instead, She Bullied Me

Empty School classroom with wooden desks, chairs, and whiteboard

Every day, I’d come home from high school and tell my parents that I was being bullied. They didn’t realize how bad it was until one late April day in 10th grade.

My teacher informed the class that we were two lessons ahead of everyone else. He asked us if we wanted to go down to the park, a grassy half-mile walk from school where we could play kickball and hang out before school ended in an hour. It was a beautiful day, and because it was technically on school grounds, it wasn’t considered a field trip. The class cheered. My school aide (paraprofessional) stood up.

“No,” she said. “Kings is too tired and she’s not strong enough to make the trip. If you go, she will have to stay here.”

My teacher looked confused. My aide was standing in the back of the room, and hadn’t come over to ask me how I was feeling or if I’d like to go. This was English, my favorite class; I spoke up every day and my teacher knew I could speak for myself. So, I tried to defend myself.

“I’m fine! I’d love to go. I really like kickball!”

My aide walked to the front of the room. Looking straight at me, with her finger out, she almost growled.

“Absolutely not. Do NOT argue with me young lady, you are not going.”

My whole face turned red. My classmates either looked straight at me or looked awkwardly away. My teacher stared between the two of us, shuffling his feet and looking lost. Finally, he murmured:

“We could, um…go out to the football field instead, and um, just hang out down there.”

The football field was literally out the door, and the special treat of going to the park was reduced before our eyes.

When I got in my PCAs car that day to go home, I was visibly shaking. I was so upset that my PCA called my dad at work, and both my parents came home early. They told me I didn’t have to go to school the next day. Instead they set up a meeting with my guidance counselor, the special education coordinator, and my aide.

At school the following Monday, my aide didn’t speak to me for almost the whole day. A sixty year old professional gave me the cold shoulder all day because I stood up for myself when she had bullied me. I thought I would be terrified, but instead, I didn’t care. I was so tired of how she was treating me.

Having my aide in school was a requirement set forth in my Individualized Education Program (IEP). This meant that I had someone other than teachers watching me every minute of every school day, someone who was supposed to help me.

But in trying to help me, my aide also kept me from many of the activities my peers were doing. Some people say that she was protecting me, but most of the time I remember her not wanting to go on field trips or out to recess because she was too bored or too cold or too tired. And because she was the adult, I had to do what she said.

This should not happen to any student, ever. We need to be aware of the way school services meant to help students with disabilities can be used against them. We need to take notice when students with disabilities are trying to speak up, trying to defend themselves. It took a moment of extreme bullying and embarrassment for my parents to realize that this was a problem. And I wasn’t asked until after the incident what I wanted, what my goals were, and how the school could help me attain them. It’s time for school systems to do a better job of taking into account the needs and wishes of disabled students when it comes to their privacy, independence, and 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

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Dear United, What If David Dao Had Been Disabled?

A United airplane hovering over a runway during the daytime.

Dear United,

Earlier this month, David Dao was dragged off a flight from Chicago to Louisville. He suffered a concussion, a broken nose, sinus damage, and several lost teeth. While I’m empathetic toward Dao and his family, this is not the first time I’ve heard of airlines grabbing passengers with numerous injuries ensuing.

Once, while boarding a plane in Charlotte, I was grabbed around the waist by two flight attendants, pulled to the ground, and told to stay there until security came. But I wasn’t refusing to get off the plane. I was trying to walk to my seat with my personal care assistant, because I can’t walk on my own. I have muscular dystrophy, a neuromuscular disease that affects my whole body, and have difficulty walking, standing or sitting up straight.

I lay there, unable to move while my back spasmed from hitting the ground. When asked why they grabbed me, the flight attendants’ stories changed from “She looked like she was walking funny. We wanted to make sure there was no suspicious activity” to “Oh, it looked like she was falling. We grabbed her so she wouldn’t fall.”

This is the treatment that I’ve come to expect from airlines dealing with disability. The amount of mistreatment and abuse is nothing new to my community, and while Dao’s injuries are extreme in their amount and severity, I know of disabled friends whose legs have been broken, backs sprained, and breathing tubes dislodged on flights with airlines who do not care about the treatment of the passengers, especially ones with mobility concerns.

What would have happened if Dao, randomly selected by a computer, had a disability? All of the details that non-disabled people have to think of in regard to flights are made excessively more complicated by the unique challenges disabled people experience.

Of course, no one, disabled or non-disabled, should have to endure what Dao did. But what if he had a disability, and no one asked?

Would the airlines have forcefully dragged him off the plane, not knowing if his bones could easily be broken, or he has stress-induced seizures? What if he used a mobility device, like a scooter or a wheelchair? Would the airlines have had the forethought to bring it up to the gate, or left the passenger stranded? Or what if he were flying with an aide, but one of them was ejected and one of them wasn’t? What then?

The kind of treatment Dao experienced is unacceptable, and the lack of empathy and understanding shown by United is horrifying. We in the disabled community are regularly subjected to the frustrations that come with flying, but what happened last Sunday is a new low, regardless of Dao’s ability. Consider if the media traction for a story like Dao’s was given to the constant mistreatment experienced by passengers with disabilities. These kinds of stories lead to resistance, which is part of a revolution. I know I am not alone when I say I am ready to start a disability revolution for how airlines treat us. And while United is the airline currently under fire, I want all other airlines to take this as an opportunity to scrutinize their passenger policies – especially those put in place for disabled passengers. 

,

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

Click here to pitch a blog post to Rooted in Rights.