A Community Reflection on Disability Pride Month

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The way that individual people connect to their disability—whether it’s mental, physical, learning, or developmental; chronic and/or dynamic; congenital or acquired—is complex. We live in a society that was not created with disabled people in mind. It’s evident every time we try to find an apartment or a doctor that understands and respects our conditions.

How do we deal with constantly being made to feel less than? We create spaces for ourselves. We foster a sense of pride around how we navigate the world. We build community around our shared experiences. Disability pride is a beautiful jewel crafted from unlearning ableism and embracing the good with the bad, recognizing the humanity that all people possess just by existing.

That’s why it hurts so much when we see companies that don’t have any insight from the community celebrating “disability pride.” It often feels like they just want to capitalize on Disability Pride Month. Where are these major companies when our healthcare gets attacked? Why do these companies only showcase certain kinds of disabilities and not others or only highlight white, cisgender people?

As a Queer woman, I’ve seen how corporate support twists Pride. LGBTQ+ Pride parades are great, but it sucks that so many of our corporate sponsors are alcohol companies, when generations of Queer and Trans people have relied on alcohol as a way to self-medicate from constant harassment and societal exile.

I don’t want that to happen to disability pride. It’s important that we address these issues now, to build the kind of future that we want to see. We must decrease generational trauma and self-loathing, not only in younger generations but support for self-acceptance and introspection in older disabled people as well.

The opportunity to control our narrative around our pride is an endeavor that should be tackled as a community. It’s not just so that nondisabled people feel more comfortable with us; that won’t bring true liberation and change. It’ll just make oppression against people who don’t fit their narrow view of productive members of society more palatable. So, I brought together people willing to be vulnerable enough to start conversations in our community.

I interviewed three different people from various backgrounds, life experiences, disabilities, and ways of thinking. But there was a common thread that could not be ignored: let disabled people take the lead. Let disabled people define what “disability pride” is for themselves because it’s such an individualistic and internal thing.

Of course, it would be easier to show a one-dimensional ad with a wheelchair user smiling as a friend pushes them up a ramp. But the world is messy and complex. Barriers related to disabilities are often not cut and dry; many of them are attitudinal and generational. It takes real effort and hard conversations to help people unlearn those types of things.

Some people aren’t ready to have those conversations. Non-disabled people, as all people with social privilege, often like to center themselves in conversations about oppression. It’s true that Disability Pride can be an opportunity for somebody without a disability to better understand our realities. But that is a bonus, not the focus. The focus should be about building community and support, so every generation that comes after us doesn’t have to experience the same feelings of isolation and self-loathing.

Focusing on community requires recognizing that we aren’t all in the same place on our journeys. Some of the people who aren’t “ready” to have these conversations are also disabled. As Patt Harris (he/him/his), disability and trans community advocate and founder of Access Inclusion Advancement Project pointed out: “Making a mission statement about what disability pride aims to do for its community” is an important step toward amplifying its message. Communication about disability pride’s goals and who they benefit is crucial to building this movement. We can’t afford to leave people behind; everyone has a place.

But when we allow nondisabled people to dictate how our images and stories can be used, it’s usually for their benefit rather than the disability community. It often feels like we have to trade our dignity for a bit of recognition, in the hope that greater exposure will lead to change for our community.

So, we have to push past surface level representation. Harris emphasizes the importance of showcasing a dynamic understanding of our community: “Teach the history of the disabled movement and show the progress that disabled people [have made over the years.” Disabled people need to be in positions of influence and control to educate others about the changes that need to happen in the world. We need to take the spaces that are rightfully ours, to honor where we’ve been, celebrate where we are, and fight for where we want to go.

We aren’t saying that we can do it alone; marginalized groups often create change through collaboration. However, we must stop treating disabled people like props, used to pull on people’s heartstrings and to make corporations seem more caring. We are tired of the same old recycled tropes. We deserve and demand better.

Disability pride, to me, is just a stepping stone into deeper waters. What if we asked for what we needed instead of only taking the crumbs that we’re thrown? What if we didn’t care as much about being liked and accepted? What if, instead, we demanded that society center respecting our boundaries, even when we aren’t happy-go-lucky and appeasing 24/7?

And we’re not trying to be difficult by dictating how we want to be treated. Isn’t that something that all people should have the ability to do? Obviously, disabled people should be held to the same standards as others when it comes to learning about, respecting, and listening to other marginalized and oppressed groups, but it’s a two-way street.

As disability pride becomes a more well-known concept, there’s a troubling trend where disabled straight, cisgender people comment on the “unfairness” of LGBTQ+ pride events being so well-attended and global. It’s not a competition to see who can get to the bare minimum first. Queer and trans people just don’t want to be murdered or abandoned by our loved ones.

That pride events are necessary for anyone is just a response to systemic oppression. My hope is that we can organize together toward ending our oppression, so that we can have true freedom and more moments of joy.

Additionally, there is so much overlap between disabled and LGBTQ+ people that shouldn’t be ignored. For those of us who exist with both identities simultaneously, navigating life can be really difficult. Priscilla Gutierrez-Wong (they/them), social activist and lifelong learner, reflected: “Allocishet disabled people should be able to celebrate pride in their disabled bodies while still acknowledging that they hold privilege as cisgender, heterosexual, [allosexual/romantic] folks with disabilities.” It’s a balancing act of respect and understanding. We shouldn’t have to choose between which pride is the most needed; the truth is they both are.

It’s not a competition. We know that true liberation will not be possible unless we openly accept all people pushed to the margins of society. Queer and Trans disabled people having our own spaces and celebrations does not take away anything from disability pride as a whole.

Disability Pride Month is a relatively new thing in mainstream media. We have the ability to set the tone of what’s acceptable if corporations want to “celebrate” disability pride. I don’t believe that we can stop them, but we can make sure that they do so in a respectful manner that uplifts all of the disability community. From the inception of these projects, disabled people must be put in positions of power to make sure that harmful images and stories are not perpetuated for profit.

If we stop supporting the bare minimum, they’ll have to step their game up. Take what you’ve learned here and realize that the disability community deserves more than the scraps we get thrown. It’s okay to question and analyze the representation that you see in the world.

The importance of disability pride and what it can do for our community is summed up in a beautiful vision from Gutiérrez-Wong: “I’d love if Disability Pride Month would…highlight how diverse [we are], how resilient we’ve always been—not because it’s easy for us, but because we have always existed in a world not designed for us. [I also hope that it’ll] continue to promote active discourse on how…to dismantle the continued barriers, personal biases, and discriminatory practices directed at disabled folks.”

I want disability pride to be beautiful but complex and messy, where we can hold the joy and the pain of disability in the same space. So that, no matter where you are in your journey to embracing your whole self, there is room for you. It has to be more than quippy social media campaigns selling cosmetics or car insurance. I want it to hold oppressive and disabling systems accountable for the suffering that they cause. I want people to stop claiming ignorance as a reason for treating disabled people as less than.

I want disability pride to be a time for us to celebrate our dead, innocents taken by capitalistic greed and selfishness that will never see the seeds that they planted bloom into a better world. I crave a society where people don’t have to spend months of their lives fighting for necessities to navigate these harsh and unwelcoming conditions. We can have that world if we spread disability pride and continue to have uncomfortable conversations.

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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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Using a Wheelchair Shouldn’t Mean I Have to Play “Guess My Weight” at the Doctor

The top of a traditional doctor's office standing weight scale

Most people know not to lie to their doctors. Nobody wants to end up like the person in a medical drama on TV who withheld vital medical information and ends up dying because of something treatable. But what happens when your doctor doesn’t want to put in the effort to get the most accurate medical information? This problem is all too common for disabled people.

When I was younger, I was able to stand without help for brief periods of time. This allowed me access to better medical care, because it meant that I could be easily weighed and my height could be accurately measured. When I was no longer able to stand at the age of 10, medical professionals simply started asking me what my best guess was when it came to my height and weight. For a while, I would simply give them my best guess. I didn’t want to be a bother. I didn’t want to be difficult. Then, while in the process of getting a new wheelchair, I had a life-changing experience: my local wheelchair vendor had a scale that you could sit on.

It was amazing. And it was so easy and safe. I figured if the wheelchair vendor could have something like this then a doctor’s office should probably have it too, but my local doctor’s office didn’t. I chalked it up to living in a neighborhood that wasn’t great and being forced to go to a community clinic with limited resources. Also, my parents were not the type of people who were able to navigate complex federal/state insurance structures. We went where we were told, and to what was closest.

Once I started taking control of my health care, I realized that guessing wasn’t good enough anymore. I wanted to start taking antidepressants and anti-anxiety medication, and I was already taking other medications. Part of being able to take those medications comfortably was knowing that all of my medical information was accurate. But I didn’t realize that it would be such a battle to get accurate medical information in a medical setting.

My primary care physician’s office didn’t have a seated scale, so when I requested an accessible alternative to a standing scale they said I would have to make an appointment with another office and that I might be charged because I already had a physical examination that year. I was flabbergasted. I was angry. I was exhausted.

When I met with my physician, we went over general questions. But despite having made the appointment to talk about antidepressants, my doctor wanted to have a different conversation–one that is common for people like me who are overweight. She told me to lose weight. I snapped and couldn’t suppress my laughter. “How much?,” I asked her. 10 pounds? 20? 100? She couldn’t accurately answer that question because she didn’t know how much I weigh or how tall I am. The doctor had no idea that I had never actually been weighed in the office. Should she even been prescribing me any medication?

Following that, the office got a new roll-on wheelchair scale and the staff received training on how to properly assist people in using it. Despite this, nurses would still periodically ask me to guess my weight even when a long time between visits had occurred. Weight is not an indicator of health, but in certain situations it’s extremely important to know how much you weigh. For example, I’m a person who has a high chance of needing surgery and how much anesthesia to use is determined by weight, so it needs to be very precise. While I don’t like the way medical professionals hyper-focus on my weight it’s equally troubling when they don’t put in the effort to get accurate information.

I shouldn’t have to beg my doctors to do their job. Accessible medical equipment should be the norm for medical facilities. They are not luxuries; they are scientific tools that contribute to overall better well-being for everyone.

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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Inclusion of Disabled People in the LGBTQ+ Community is About More Than Accessibility

Photo of Yolanda in a black dress and pink scarf sitting in a manual wheelchair

Accessibility at major Queer events like Pride is extremely important to disabled LGBT2SQQAAIP (Lesbian Gay Bisexual Transgender Two Spirit Queer Questioning Aromantic Asexual Intersex Pansexual) people, and many of us are willing to provide guidance to help make it happen. But disabled people can offer more to the Queer community than just insight on how to create accessible spaces. Unfortunately, it often seems like the community at large doesn’t want anything else from us and that we can only exist in Queer spaces if we agree to provide free labor and focus only on addressing questions and concerns about disability from our nondisabled Queer and Genderqueer siblings.

Access-related issues will always be close to my heart as a wheelchair user and somebody with several mental health disabilities. But did you know that I spent almost two years working with Queer youth of color to help them navigate resources and support systems? Or that I have professionally presented on how to maintain healthy boundaries when dealing with Queerphobic/Transphobic family members? Most people don’t recognize this, and so the requests I receive for both paid and unpaid labor are primarily disability-centered.

Here’s the problem: LGBTQ+ leaders are missing out on a wealth of personal and professional insight on a variety of issues if they’re only allowing their organizations to reach out to disabled activists and advocates for disability-specific inquiries.

I am a delicious slice of disabled pansexual carrot cake. I am complex, rich in flavor, and super sweet, yet I am not being fully enjoyed. LGBTQ+ organizations are scraping off my cream cheese frosting and tossing away all those wonderful nuanced layers beneath.

Of course, you should be hiring disabled people for input on accessibility. But what’s not okay is only giving us space for our voices to be heard on disability. When you do this, you’re saying that Queer disabled people should only be allowed limited power and influence, and that you don’t see access needs as relevant to the larger LGBTQ+ community.

Breaking this cycle doesn’t have to be a challenge. Get to know the Queer disabled people in your community. Learn their skill sets and passions, just like you would with our nondisabled siblings. Reach out to them and let them know when there are opportunities to be involved in upcoming professional and recreational events.

I understand this can be intimidating, especially when for local grassroots organizations that rely on a handful of people to get things done. But remember, the Queer community is incredibly diverse, and there’s no set way to serve the community.

Work with the people in your communities to figure out what’s best for everyone and make sure that disabled people are part of that process from the very beginning. Don’t be afraid to let us lead.

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.