Disability Pride Month was created to honor the diversity and uniqueness of people in the disability community. It takes place every July, which is also the month when the Americans with Disabilities Act (ADA) was signed into law in 1990.
It’s an important opportunity for those in the disability community to be seen and heard. While some disabilities are plainly visible, others are what many in the chronic illness community call invisible. Yet even invisible disabilities are visible to those who care to notice them.
To help reduce stigma, discrimination, and ableism, we asked members of the Global Healthy Living Foundation community about their experiences living with a disability and what this month means for them. “There’s a lot of shame that society puts on disabled people,” says CarmenRose Fiallo. “July is our month to take up that space, which is space we should always be taking up, but there’s not always room for us. Being disabled isn’t something I’m ashamed of. It’s made me who I am today, and it’s helped me become a better advocate and a better person.”
Read more honest responses below — and share them with others to help raise awareness this month and beyond.
What Should Others Understand About Chronic Illness/Disability?
“Chronic illness and disability affect your whole life to varying degrees. This leads many to find ways of adapting to the changes and challenges in ways that still allow people to manage quite well. In short: People living with chronic illness, disability, or both are capable despite what society may think.” — Effie Koliopoulos
“I wish there was more respect for what I need to do (or not do) to manage my condition and more willingness to change so I am included.” — Lene Andersen
“When there is no cure or treatment that works, embracing your disability/chronic illness is not a bad thing. Disability has brought me purpose and a community.” — Kelsey Feng
What Does Disability Pride Mean to You?
“Disability pride is a celebration of the lives that are so often excluded and stigmatized. It is also a way to raise awareness and protest against the impact of ableism and lead to a more inclusive society.” – Lene Andersen
“Disability pride means being my true self. When I go out into public with my walker or cane, I’m being my true self and helping myself at the same time. When I go out without a mobility aid, I know that I will suffer later just to not be judged. Being proud to be disabled and not ashamed makes a huge difference for me both mentally and physically.” – Steff Di Pardo
“Disability pride means showing that disability isn’t a dirty word. It’s not a bad thing. I grew up in an ableist society that told me being disabled was bad, ugly, and something to be ashamed of. Becoming disabled forced me to rethink how I viewed and thought about disabled people and their experiences in society. As disabled people, we often feel like a burden to everyone around us. We’re nervous to ask for the accommodations we need. We’re often gaslit and invalidated about our experiences.” — CarmenRose Fiallo
Have You Ever Felt Like You Had to Disguise Your Condition?
“Yes. I feel I can’t acknowledge my conditions at all in most circumstances and still be taken seriously. It’s almost like my conditions put a target on my back for the ‘you’re too young to be that sick’ crowd.” — Derek Schmitz
“Every single day. Even though I’m comfortable being open about what I need, there is always a requirement to compromise — and the person who compromises is usually me. It’s rare for people to be fully open to an environment and practice that include me, especially if it means they need to compromise their comfort or choices. Unfortunately, that means I have to compromise mine.” — Lene Andersen
“I’ve definitely felt the need to disguise the severity of my condition before. Even with some close friends, it’s hard to show my true, disabled self. I’m good with being my true self around family, but I don’t like to bring the mood down around friends, so sometimes I tend to hide the severity of how I feel.” — Steff Di Pardo
“Unfortunately, I have absolutely felt the need to disguise the severity of my condition just to avoid an uncomfortable confrontation among peers. I am thankful enough to have an extremely accommodating workplace and coworkers, but I have really struggled among peers and friends. Because I live with chronic migraine, my life is super unpredictable. My symptoms can dramatically change at the last minute. So oftentimes I ‘power through’ my symptoms because I don’t want to disappoint people. Especially since my condition is an invisible disability, it’s easy for me to disguise the severity of my pain. While it shouldn’t be like that, that’s the reality of living in a predominately ableist society.” — CarmenRose Fiallo
What Accommodations Have Made Life a Little Easier?
“Yes. Remote work/schooling has been a lifesaver. I look back on my seven- to eight-hour days at hard desks in school buildings and have no idea how I did it. Being remote allows me to accommodate myself better than anyone else in any other situation. So if I need to take a 30-minute break in bed, I can, as long as the work gets done. And, I’m a very busy person, so being able to craft my own schedule is very nice.” — Derek Schmitz
“In college they had a Center for Students with Disabilities. Without the support, resources, and community provided there it would have been tough. Anyone could walk through those doors and ask for assistance if they needed it, without judgement. Also, I worked for companies that either understood about my health condition or had no problem hiring you if you lived with a chronic illness and disability. I guess that is a personal accommodation, which I sought out for myself when applying to jobs, and it ended up working out well.” — Effie Koliopoulos
“My job accommodated my request for flexible breaks which allowed me the space I needed to manage migraine attacks.” — Kelsey Feng
How Can Family and Friends Help Combat Ableism?
“Follow disability activist accounts on social media. Get involved with organizations that support those living with disabilities. Learn as much as you can about what ableism is. Become an advocate for better accessibility — notice where your loved one may or may not need more accommodations within their surroundings.” — Effie Koliopoulos
“Centre and amplify disabled voices on social media. Dedicate yourself to dismantling your own internalized ableism. And wear a mask to make it safer to be in the same room (or concert or arena or museum or restaurant) with you.” — Lene Andersen
“The best thing my friends and family can do for me to combat ableism is to ask me how they can best accommodate me. It can be really frustrating navigating an extremely ableist society as a disabled person. It’s exhausting. So when my loved ones can make my day easier by accommodating, it makes a huge difference. Also, educating yourself is a huge piece of combating ableism. Growing up in the American education system, we are not taught about the disabled experience in America. I know I barely learned about it growing up. There is so much that I have taught myself since becoming disabled. So if friends and families want to support disabled folks more they should put in the work to educate themselves about the disabled experience in America. That way disabled folks don’t have to use our very limited energy to explain to folks.” — CarmenRose Fiallo
How Has the LGBTQIA+ Community Provided Additional Support?
“Having that community is what has gotten me through. There’s so much intersectionality in the LGBTQ and disabled/neurodivergent spaces that it’s so easy to fit in and find folks who just ‘get it.'” — Derek Schmitz
“With chronic illness, there are so many barriers to access to care and add in being queer to the mix, well then you need the support of your community. The LGBTQIA+ community has been there and understood when I have reserves about events or people that cis, straight people often don’t understand.” — Kelsey Feng
“The LGBTQ community has provided amazing support and inclusion throughout my wellness journey. Navigating the health care system as a queer person is so much different than navigating it as a heterosexual person. When I first came out as queer I didn’t expect my experiences in the health care system to be any different. I assumed that the gender of the person I was romantically involved with wouldn’t negatively impact my experiences. But I was wrong. Talking to other folks in the LGBTQ community made me realize that my experiences weren’t rare; a lot of people could relate. The best advice I received, and that I now tell other folks from marginalized communities, is to find doctors who share identities with you — whether that’s a woman of color, a queer doctor, or whatever aligns with your values. The validation and support I received from my own community was amazing. It was nice to know I wasn’t alone.” — CarmenRose Fiallo
Want to Get More Involved with Patient Advocacy?
The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.