16 Feb User Spotlight: Disabled Model, Farrah
Visiting their family in the mountain town of Asheville, Farrah (they/them) was walking around the town enjoying the fresh air and lively environment. As they were walking up a hill, they felt fatigued, overwhelmed, and nervous as their body began to give signs that it was struggling to move on. “The steepness of the sidewalk, the way the bones in my feet were dislocating as I was walking, the fatigue from it all was hard on me,” Farrah said. Farrah had been told by their doctors and chronic illness community that they may one day need a mobility aid, but Farrah was still processing the possible implications. Living with Ehlers-Danlos syndrome and fibromyalgia was hard enough but disregarding the idea of a mobility aid was easy.
“I was dealing with a lot of internalized ableism.”
Internalized ableism is when a person who lives with a disability discriminates against themselves by believing that having a disability is something to be ashamed of or something to hide from others. Internalized ableism is something that countless people with all types of disabilities deal with and can be difficult to overcome. Many individuals who live with invisible illnesses such as EDS, POTS, and fibromyalgia can live with some type of internalized ableism because people around them do not treat them as if they have a disability because it is not visible.
For Farrah, not only was living with a disability difficult because some of their doctors did not trust them, but it was also difficult because they would “gaslight” themselves about their own health. This internalized ableism made it difficult for Farrah to accept the idea of using a mobility aid.
Farrah first learned about the concept of internalized ableism through “disability Twitter.” Disability Twitter refers to a community of people with a mixture of disabilities on the Twitter platform. Disability Twitter is a supportive community that has been an incredible resource for Farrah to learn more about solutions to living with Ehlers-Danlos syndrome and fibromyalgia, two rare diseases with limited medical studies available. “Disability Twitter has helped me practically and both mentally and emotionally,” Farrah said.
That day on the hill, Farrah finally decided that the help of a mobility aid was more important than what they thought of themselves. Farrah stopped in a general store and bought a wooden walking stick just to get back to their vehicle. “I’ve been using a cane or some type of mobility aid ever since. And my life has been better, and less painful, and more open to me as I started to use the mobility devices I need.” Farrah said.
Navigating the medical world with an invisible illness
When they were 21, Farrah self-diagnosed themselves based on their best friend who lives with Ehlers-Danlos syndrome. The doctor at the time accepted their self-diagnosis but didn’t recommend any treatment because EDS was such a rare condition at the time. As you can imagine, this was difficult for them as they were looking for solutions to the pain and dislocating limbs that they were dealing with on a daily basis. “I was like a really flexy, bendy, gymnastics and dance kind of kid. But also complained a lot about aches and pains, which was mostly disregarded as growing pains,” Farrah said.
Since then, they have found a new set of doctors to advise them in their chronic illness journey. “I have an incredible medical team. My doctor is wonderful. They recognize and acknowledge my disabilities and conditions, rare or not, and really worked with me which I’m so grateful for,” Farrah said.
“I use what fits best for the day.”
Today, Farrah uses a variety of mobility assistants including a cane, wheelchair, and the M+D Crutches. Every morning when they wake up, they decide what mobility device they will use for the day. “It depends a little bit on my pain level, but also what I’m doing that day,” Farrah said. If they are just hanging out around their house, they likely use their cane or crutches depending on how much support they need.
“If I’m going to go for a short walk around the lake, I’m going to go with my M+D Crutches as they allow me to be on multiple types of terrain with good support.”
In the past, Farrah tried using many different types of crutches, but ended up hating the way they supported the joints on the body. For that reason, Farrah had put off getting crutches for a long time and just stuck to using their cane. After seeing a Mobility Designed Instagram ad, Farrah’s partner showed them the M+D Crutches and said “Look at these neat, sci-fi looking crutches! They also look like they solve a lot of the problems you complain about with crutches like your hands being occupied.” Farrah agreed and purchased the M+D Crutches.
Farrah enjoys many features of the M+D Crutches including the hands-free mode. They especially like the way that their weight is distributed on the crutch throughout their forearm. “The crutches are way less painful for me and help keep me from actually dislocating stuff as much,” Farrah said.
“Slowly seeing the benefits in my life.”
As Farrah began to adjust to their new look of using a form of a mobility aid, they began to embrace it. It took some time to adjust to how people looked at them in public, but Farrah said that what was more difficult was learning to accept what it looks like to be visibly disabled.
They find it interesting how others around them treating them as they use different mobility aids. “The more visible the mobility aid I’m using; the more compassionate people seem to be. Whereas the more invisible the disability is, the more people don’t understand,” Farrah said.
One aspect about living with a disability that is important to Farrah is making sure that the minority disabled voice is heard. Farrah is very involved in changing public policy to fit their needs and the needs of others with disabilities at a local, state, and federal level. Farrah it is also part of the #DisabledModel community on Instagram – a community with more than 10,000 disabled models. Together, Farrah believes they can make real changes to the legislation that often is a barrier for people with disabilities.
Photographer: Kaitlin Amy Traynor