I know a lot of women whose rheumatoid arthritis (RA) has affected their hands, and it has taken a social toll. I see them hiding their hands under the table and in their pockets because of the visible effects of the condition. They tell me they are ashamed of their hands, of what RA has done to them. Not wanting to draw attention to changes in their knuckles and fingers, they mourn the beautiful rings relegated to drawers and the loss of playing with color on their nails. It breaks my heart every time I hear this and it's one of the reasons Disability Pride, observed throughout the month of July, is so necessary.
Disability pride focuses on breaking down physical and attitudinal barriers to the full participation of those of us who live with chronic illness or disability and promotes the idea that disability is a natural and—yes, even beautiful—part of the human experience. Stirring stuff, isn’t it?
“But what is there to be proud of?” This is a frequent reply when I mention the term “disability pride” and it usually comes from able-bodied folks. Admittedly, this does get my back up a bit as they are at that very moment speaking to a woman sitting in a wheelchair! But after my initial eye roll, I try to see it as an educational opportunity. I remind them that the opposite of feeling pride is shame, point out the stunning range of variety in humanity, and start in on my prepared spiel about ableism.
Just like sexism and racism, ableism is actions, words, and attitudes that limit or discriminate against a particular group of people—in this case, people with disabilities. It’s astonishing how many are well-acquainted with the concept in the context of sex and race, but at the same time have never heard of ableism. To me, this is an indication of just how deeply integrated this particular -ism is in our culture, to the point of it being the norm and utterly unrecognized.
I was introduced to disability activism in university, around the same time the Americans with Disabilities Act was passed and which turns 30 this year. I’ve seen firsthand the difference it and similar types of disability justice legislation in other countries have made in reducing accessibility barriers in our infrastructure and culture. But laws are not enough—we need a movement to create awareness of the many ways in which ableism is expressed, and allies to support us in the fight to be included. The ability to make friends, meet lovers, have a career and create a family should not be blocked by structures, policies, and attitudes that exclude.
“We are more disabled by the society that we live in than by our bodies and our diagnoses.” In her brilliant TED Talk, Stella Young, the late Australian disability advocate, reminded us that the medical definition of disability isn’t the only game in town. Its alternative, the social model of disability, states that the existence of barriers to participation is the very thing that creates the disability. It’s a perspective that completely shifts the focus and empowers in the process. Embracing this view had a profound impact for me personally, helping me to come to full acceptance of who I am and my right to take up space in this world, as well as making my advocacy more effective.
Imagine this: Having a disability or chronic illness isn’t actually the problem; the rigid norms of our culture is the barrier. We—you and me—are fine, just the way we are. And we can be proud of that.
If you’d like to become a stronger ally for your loved ones, neighbors, and the strangers you meet who live with disabilities, one of the simplest ways to start is by following some of the incredible advocates out there on social media. These are 11 of my favorites on Instagram (including a few follow-worthy hashtags), and I hope you’ll be as inspired by them as I am. (And P.S. You can find me on Insta @theseatedview.)
Follow these incredible advocates on Instagram:
Shane Burcaw and Hannah Aylward — @shaneburcaw and @hannahayl laughingatmynightmare.org
An interabled couple who have a popular YouTube channel, where they are very frequently harassed in the comments by people claiming their relationship is a stunt, because a beautiful (able-bodied) woman couldn’t possibly love a man who is a wheelchair user. Shane has also written several books and runs Laughing at My Nightmare, Inc., a nonprofit organization that offers disability education and equipment for those who need it.
The Divas with Disabilities Project — @divaswithdisabilities divaswithdisabilities.org
It started out this an online project amplifying the voices of African-American women with disabilities and has now evolved to a network supporting disabled women of color.
Amy Purdy — @amypurdygurl
Amy is a double leg amputee Paralympian snowboarder, who is also motivational speaker, actress, and Dancing with the Stars contestant. Over the past year, she has been struggling with complications and shares her thoughts about the experience.
Alex Darcy — @wheelchair_rapunzel wheelchairprapunzel.com
Alex’s experience living with Spinal Muscular Atrophy led her to get a movie through her size-inclusive clothes celebrating that disabled bodies are just as sexy and beautiful as any other body.
Haben Girma — @habengirma habengirma.com
A disability rights lawyer, author, and speaker, Haben is the first Deafblind person to graduate from Herbert Law School.
Rollettes — @rollettes_la rollettesdance.com
The Rollettes aim to empower women with disabilities and shift perspectives through dance.
Styna Lane — @StynaLane linktr.ee/StynaLane
Activist and author, Styna regularly exposes ableism and has a truly beautiful way with words.
Chronic Sex — #chronic_self_love ChronicSex.org
Intimacy and sexuality come last on the list in conversations about chronic illness and quality of life. Grayson Schultz founded Chronic Sex to blast some myths and help people with chronic illness have better sex.
A Canadian fashion designer is one of the pioneers of adaptive clothing and created IZ Collection consisting of fashionable clothing specifically designed for the needs of people with disabilities.
Carly Findlay — @carlyfindlay carlyfindlay.com.au
Carly is an Australian author and activist, who lives with Ichthyosis. She focuses on appearance diversity.
Charis Hill — @beingcharis beingcharis.com
Charis is a speaker, writer, and model who lives with ankylosing spondylitis and was featured in the documentary Becoming Incurable.
Hashtags to follow: