July is Disability Pride Month, a celebration of disability as an identity and culture. As part of our celebrations, we asked staff at the Minnesota Council on Disability: What does Disability Pride mean to you?
Remarks lightly edited.
On this page:
Another Reflection from David Fenley, ADA Director
How is it possible to have pride about something viewed by society as a bad thing? The contributions that folks with disabilities bring to this world are immeasurable. We could count to innovations that disabled folks have come up with, or inspired, and that list would go on for a very long time. It is impossible to not be innovative and experts in adaption when navigating a world not built for you. It is called survival.
But, how much of our society understands how these contributions have made life easier for everyone? How much of society is uncomfortable around people who look, move, and think differently than them? How much of society willfully, or unwilfully, chooses not to recognize disabled folks in their entirety?
We are not inspirational wheelchair users who are differently abled. We are not quirky Autistics with a superpower. Using rigid norms to define what it means to be “human” is bigoted at best and deadly at worst. We don’t need your silly euphemisms or your pity or your sorrow or your charity. It is much simpler than that: we want to be SEEN as fully human. It is not easy to have pride in an environment that ignores you. Ask yourself, how can one-quarter of the population – a group that anyone can join at any time – a group that everyone will join at some point in their life, be so invisible? It is because you don’t want to see us. We remind you of your own humanity, and it scares you.
If disability is inevitable, disability pride is inevitable.
Axel Kylander, Public Policy Associate
I often feel like I can barely remember who I was before PTSD (Post Traumatic Stress Disorder). As for who I am now, pride is not something that comes naturally with my disability.
There is an awful confidence that comes with my PTSD, but that’s not pride. It’s the ability to be in, or imagine, a majority of stressful situations or life events and think, “Well, I’ve survived worse.” If I’ve been through bad things before, I can do it again, however many times life asks me to. It’s the confidence of constantly preparing for the worst, on the assumption that it’s always right around the corner. But there’s no joy in that and no pride.
Living with PTSD, for me at least, often feels like having half of me weighed down, forever sinking into the past. It’s like I live with a filter of grey cast on the world, over everything in the present and in every dream I dream. In day-to-day life, I’ve often begrudged my PTSD, lamenting a society more equipped to judge it than to honor it, and blaming myself for grappling with the weight on my heart and those grey, bleak thoughts that always come to my mind. Where’s the pride in that?
The society we live in often makes pride a difficult proposition. Not talking about mental health struggles of any kind is deeply ingrained, as is the concept of “Just getting over it.” There’s this internalized voice that tries to tell me that if I just tried a little harder, I wouldn’t feel this pain all the time, or that it’s actually laziness that’s causing a bout of low energy or the need to take a break, as opposed to trauma. It’s a voice that tells me that others will always see the outward impacts of my PTSD as failings or weakness on my part.
I work against that voice every day, constantly trying to negotiate a self-image that gives me a foundation other than self-loathing or guilt or regret. Part of that comes from knowing what I need and attempting to frame it positively in my internal dialogue. To give myself the same grace I would give someone else. For example, I’ve been working on flipping my perception around resting. I need a break sometimes to rest and recover. That isn’t a lack of effort; it’s actually an application of effort. To self-advocate and stay in tune with my needs, in the grand scheme of things, makes me healthier and better at the things I want to do.
Part of the challenge in doing this in a society so rooted in ableism and the stigmatization of mental illness is that claiming the space and accommodations you need is almost an innately political act. Going against the norm is modeling what our world could look like – accommodating, inclusive, supportive, and kind. The use of accommodations shouldn’t come with emotional labor, but it often does.
People have asked me if I feel like the experiences that traumatized me are a gift in some way, if I’m grateful for lessons learned from them. I wish more than anything that those things had never happened, and I don’t think trauma is a gift. But I think I have found lessons for myself within this journey that are gifts, that help me find meaning or make me feel like I can help others. I find that the happy moments, when I find them, burn more brightly than I ever remember experiencing before. I often think of how glad I am to experience those moments with such richness, with the profundity that comes from finding the bittersweetness that is peace. I think, most of all, I treasure the empathy that lived experience and time have given me. I have the urge to use that empathy at every opportunity, knowing what it is to not have empathy applied to me.
So where do I find pride? I find it in those gifts and in my long, constant dialogue with myself. I find pride in how well that dialogue makes me know who I am and what I want to do. I find pride in the way empathy is at the forefront of my mind and when I flip the stigmatized narrative and realize the way I experience the world doesn’t have to be defined by that grey filter. It can be defined by all the hope and inspiration I find in opportunities for improvement, for compassion, inclusion, and justice. I find pride in self-advocacy and in seeking accommodations when I need them. I know that I am doing something that challenges the negative half of that internal dialogue and does a little to chip away at that crumbling, blockading wall of stigma. I find pride in knowing the beauty of bittersweet moments.
Disability Pride for me means embracing all facets of who I am, and it means replacing shame and despair with hope and empowerment.
Ginger Hedstrom, Administrative Support
Mama always said, “The day you don’t learn something you might as well stay in bed.” My learning curve here at the Minnesota Council on Disability (MCD) has been steep, invigorating, expanding, puzzling, and exciting–with an occasional dose of frustration tossed into the mix. It is a living education that constantly teaches me how far we have come and how far we yet must go to move beyond the countless decades when people living with disabilities were considered lesser and invisible. Incapable of learning, feeling, and belonging–belonging to families and society. We are moving towards a society where Disability Rights are a reality. The work is critical and ongoing.
MCD’s vision is “a barrier-free Minnesota where every person with a disability has full access to all areas of life.” The first time I read that, I was immediately taken back to 1960 when I learned one of my close high school friends had a sister named Cathy, whom no-one outside the family knew existed. Her family loved her deeply and privately, as she lived with Down Syndrome. Next, I was hearing my father yelling, “Speak up. Can’t you talk clearly? Look at me when you talk to me.” In moments of complete frustration, he punctuated his demands with a sound smack! As a child I knew he was angry at me/us/the world constantly. Not knowing why, I was sure I was at fault.
In the 1960s, being a person living with Down Syndrome and a man with profound hearing loss were both rooted in shame. The person was seen as less than, rather than having different abilities and needs. Both Cathy and Dad lived behind massive barriers.
“Barrier-free” begins when we remove the stigma, eliminate shame, educate, advocate, and create public policy that creates a world that supports people living with disabilities and those who love them for who they are. Not who we think they “should” be. I now know that my father and his siblings suffered from devastating lifelong profound hearing loss, which was seen as “a shame.” My hearing loss is related to normal aging. I have excellent hearing aids and talk about it with great ease thanks to medical, societal, and public policy advancements that my dad could never have dreamed possible.
“Barrier-free” today also means that I was able to spend last Friday with a beautiful teenage girl, “Lilianna.” She loves school. Her wonderful “Lilianna personality” is vibrant and fun. She is deeply loved in her family and beyond. I watched in delight as her grandfather took her to an accessible swing, buckled her in, and set the swing in motion. I have a picture of their smiles reflecting the love and joy made possible by her family being able to take her to an accessible park with accessible equipment less than two miles from her rural Minnesota home. Cathy and her family would have loved that too!
I am also being educated by the people who attended the 2022 Minnesota State Fair and responded to the question “What Does Pride Mean to You?” Their handwritten responses, which I transcribed into a lengthy document, taught me that while many barriers have been removed over the last 50 years here in Minnesota, there are many more barriers that need to be removed to make all forms of learning and information, public spaces, homes, transportation and facilities accessible and safe for all people. Like all of us, I want all barriers removed now!
I can bake my Grandmother Elsie’s glazed cinnamon rolls in three hours and weed and water my three accessible raised gardens in one hour. Some things take more time. It took women advocating for change from 1878 to 1920 before Congress ratified a woman’s right to vote, until 1965 for the Voting Rights Act to enforce the right to vote for African Americans, and it took Congress until 1990 to pass the Americans with Disabilities Act (ADA).
Minnesota and MCD have made remarkable progress for the people of Minnesota. Yes, the people of Minnesota. Until MCD entered my life, I took no notice that the doors that open automatically to support a barrier-free entrance for people living with disabilities, also benefit me when I am carrying two double bagged grocery bags out to my car. They benefit me as a private nanny when I take children in strollers into buildings and bathrooms with ease through those same doors. Yes, what benefits the disability community provides benefits for all Minnesotans and those who visit here.
Considering, the above, my answer to “What Does Disability Pride Mean to YOU? is: Today I am grateful to have learned so much about Disability Pride; to be able to live from a place of Disability Pride; and to put the days of disability shaming, disability invisibility, disability exclusion in my file that reads: “Things no longer acceptable.”
Linda Gremillion, Operations and Program Director
Every disability is different, everyone experiences “pride” differently.
I used to believe pride was a spiritual crime, something to overcome because I was a willful person.
“Will,” yes. I better figure out how to have some will POWER when it comes to having my mental health disability.
People tell me my broken soul as a result of Complex and Chronic PTSD (Post-Traumatic Stress Disorder) is a moral failing, that I need to “think” positively, to “change my mind” to look at the “bright side” and that “everything happens for a reason.” Talk about a crime. Those messages held me hostage for many years.
I had to find my willfulness as trees asked me to drive into them while making my way home from upsetting situations. I had to find that willfulness while in a work meeting and seeing my soul fly out of my body and lurk in the corner of the ceiling because someone with power discounted good and lovely people in the room. I had to find my pride when security showed up at the doctor’s office to subdue the “crazy old lady” because I wouldn’t let a medical provider touch me when they didn’t treat me with respect.
To find my “will” to live has been a journey I’ll grapple with for the foreseeable future. I continue to set aside shame messages about mental health and live in my willful pride. The only way I can stay stable is by living in my willful pride.
Disability Pride – for me – is living without shame. Disability Pride is a living will to be alive. I’m proud because I understand. I’m proud when I get and give good hugs. I’m proud when I make someone else feel safe. I’m proud when I don’t let toxic positivity erase my way in the world.
I’m proud of you, person with a mental health disability, for being alive today.
David Fenley, ADA Director
Disability Pride is complicated. One can feel pride and guilt about their disability at the same time; I do every day. Disability Pride comes from within. It comes from community and self-worth. Guilt comes from without. It comes from a world that no longer values and recognizes beauty in minds and bodies that think and move different from the dominant culture.
For my entire life society has been telling me that to be disabled is to be not fully human. For thousands of years the world has been telling everyone that disability is a bad thing. Today, disabled folks are killed, sterilized, institutionalized, marginalized, and segregated for the mere fact they do not fit current definitions of value and beauty. Minds and bodies have been commodified under a narrow understanding of what is valuable. Money is valuable. Production is valuable. Beauty is valuable. What about daydreaming, creativity, and empathy?
I know guilt because I am unable to produce at an acceptable rate.
Disability Pride has not been part of my life for very long. For decades I hid my non-apparent disability from myself and the world. I was conditioned to know disability as a bad thing.
I feel pride because I have a knack for understanding people and situations. I feel pride making folks laugh. I am proud because of my disability, but it remains complicated.
If disability was viewed with pride, there would be a lot more disabled folks. I want to be part of a society where people have no reason to deny their differences, or the differences of others. This is Disability Pride.
Trevor Turner, Public Policy Director
I recently attended the Usher Syndrome Coalition’s 2022 USH Connections conference in Austin, Texas. Several hundred people converged from across the country to meet others who have Usher Syndrome just like them.
Usher Syndrome is a rare, inherited genetic disease that causes hearing loss and blindness. I have known that I have a hearing loss since I was 2 years old, but I only found out that I had Usher Syndrome when I was 19. Because the condition is rare, I never actually met anyone else with Usher Syndrome until I attended my first USH Connections conference in 2019.
For most of my life, I thought that my disability was something I had to overcome. I thought that my disability was the barrier to me living a normal life. When I found out I was going blind in 2007, I was motivated to “see the world, while I could still see the world”. I studied abroad, worked in different countries around the world, and saved money for trips for new countries on my travel wish list. It was a race against time as my vision deteriorated. My identity began to conform around international travel, and I proudly did all of this despite my disability.
I know now that what I was experiencing was internalized ableism. My entire life I was told – or made aware – that my disability made me less than others, and that the world was not meant to be for a deafblind person.
When I did anything outside of what was expected of a deafblind person, I was told I was “inspiring,” and I internalized the thought that my value as a person depended on my ability to exceed expectations of my disability. I never asked for help even when I needed it. I remained quiet in situations where I couldn’t hear or struggled to see because I didn’t want to burden other people. I didn’t want them to see me as disabled.
But meeting other people with Usher Syndrome changed all of that. Being able to commiserate with people who could empathize with my experience was a game-changer. My first time on a Zoom call with 20 other “ushies” (people with Usher Syndrome) was more cathartic and gratifying than any therapy session I’ve ever done. Meeting other people with Usher Syndrome taught me that the barrier to a normal life was not my disability, but the society that builds those barriers. Meeting others with Usher Syndrome taught me that I’ve accomplished everything in my life because of my disability. I learned to be proud of how my disability has shaped me as a person.
My disability has taught me empathy and compassion for others. It has taught me to be creative and think outside of the box when solving problems. My disability has also connected me to thousands of amazing people with disabilities who bring me great joy every day of my life. My disability has taught me that we have strength in numbers, and that our community is the most powerful when we are connected. We dismantle barriers when we take pride in people that have been shaped by disabilities. Together we provide a community to all those who are on a journey towards disability pride.
During Disability Pride month, we must never forget that our disabilities may not define us, but they certainly shape who we are as a person. We should be proud of that. We also must remember that Disability Pride is about community and supporting others with disabilities.
Pride equals Community!
Sophie Strzok, Public Policy and State Fair Intern
When I think about what disability pride means to me, I think of the power in owning my stories and having them be uniquely mine. No one can take them away from me, and I feel free to share them however I feel comfortable. Many of my stories include hardship during surgeries or medical complications that I have had. But a lot of stories include the success and emotions of overcoming these hardships and proving many individuals that I can own my story and my life.
So many people who were doctors, nurses, medical professionals, and educators didn’t believe in my capabilities and would make assumptions about my likelihood of succeeding in life. Some thought I wouldn’t live past a certain age. Some thought I would need more medical intervention and services like a trachea or using a wheelchair the rest of my life.
I am proud to have a disability and to have the ability to own my stories and experiences that are unique to me. Empowering someone to own their stories and experiences can really give them the feeling that they not only matter, but that they are heard and that they have ownership of something no one can take away from them.
Lately, I have felt a shift in workplace customs and really have been interested in how the new work from home trends have emphasized the truths around mental health. Even on a virtual meeting, stigma exists around individuals who have mental health challenges or are not able to regulate their emotions to match the workplace standard. Turning off your camera if you need to is still not a workplace norm in every instance, and it really has exposed how individuals with mental health – or even those without – are forced to mask their emotions while working, even in online formats.
This workplace shift of allowing emotional vulnerability is still a work in progress. Hopefully, with time, the standard will drift further away from people hiding behind a mask of emotions, and instead, they feel comfortable expressing their emotions without concern of being ostracized.
Disability pride can be interpreted however one feels, but I believe that disability pride stems from each person’s individual stories and experiences. Not being comfortable to live in your own body and mind can be very difficult for individuals. Unfortunately for some, this is a daily reality.
The workplace can be very toxic for individuals if they feel they aren’t able to be themselves. This is not exclusive to the workplace: a multitude of institutions that have stigma or assumptions about people with disabilities can create barriers for people just trying to live their best life.
Not feeling heard or fully accepted in society is still a truth that exists for many, including myself, and it ends up being a constant need to survive and fight to share what is needed.
In today’s society emotional vulnerability is still stigmatized. If individuals like me are not allowed to emote through the stories and experiences that got them to where they are, it makes the individual feel lessened and no longer valued in society.
Let’s change that.