Therefore, I will advocate in any way I can for my friends and colleagues in the disability community. I want to be a part of the solution, and work to continue the path to access basic rights and freedoms.
After Pride Month in June where the LGBTQ+ community celebrates some freedoms, they now have after decades of fighting and advocacy, the disability community, who have always been an ally of the disenfranchised, also are still fighting for the most basic of human rights. Disability Pride Month, July, is one event of activism towards this cause. One of the most marginalized groups in our society are persons with disabilities. According to The United Nations Department of Economic and Social Affairs/Disability Fact Sheet, about 15% of the world’s population has a disability and this represents the world’s largest minority (WHO). Many of those with a disability live at or below the poverty level often because of barriers limiting their capacity to fulfill basic needs able-bodied take for granted every day. These needs include but are not limited to, affordable and accessible housing, transportation, accessible work environment, and accessible healthcare.
One of the biggest ways to make a difference in any community is to work WITH individuals, and not FOR them. By truly listening we can ensure our alliance and advocacy are being directed where they are intended to go. Brené Brown imparts it best when she says, “In order to empathize with someone’s experience you must be willing to believe them as they see it, and not how you imagine their experience to be.” As therapists we often want to jump in and fix a situation with all the tools we’ve been given through education and career experience but stepping back and viewing the situation WITH the individual and their experience will allow for the best possible collaboration and outcomes. My purpose in writing this blog is to use the platform I’ve been given to raise awareness and highlight some real-life experiences those with disabilities have had. To hear about those experiences have allowed me to grow and I hope it will have the same effect on readers.
Christie and her friend Maggie.
Did you know accessible healthcare isn’t currently a standard, even in North America? If you didn’t, it might because you don’t know a person with a disability. I have worked with children with disabilities for a large portion of my physical therapist career and these children have now grown into adulthood. It’s easy for a caregiver to lift a child out of a wheelchair onto an exam table when the child is 6 years old, it’s much more challenging for that same individual as an adult to transfer onto that same exam table that is not accessible and does not adjust in height. Unfortunately, this is just one example that happens often. These situations can lead to frustration and poor healthcare access, possibly leading to health issues that could be avoided if accessibility wasn’t an issue.
Inaccessibility to transportation is another barrier which individuals with disabilities are faced with. Depending on geographical location, public transportation might not be an option and not every person can afford an accessible van, which can easily cost $50,000.
My friend, a woman with a disability who utilizes a manual wheelchair, does not have access to public transport, does not have a car and therefore deals with inaccessible transportation all the time. To get to physical therapy appointments twice a week she uses a ride-share company and spends anywhere from $40–60 US dollars per trip one way. She does not qualify for government or financial assistance to help subsidize the cost as her job is considered to be too substantial financially. She is working to save up money to purchase a vehicle and have modifications made but hasn’t been able to do so yet. Even if she had a power wheelchair, it cannot be transported in a Ride Share vehicle. The positive of the situation is that she is independent with her manual wheelchair, and she is making it work; I do think we can agree it is not ideal.
Accessibility in the community, which seems like it should be a basic right in 2021, is still a colossal issue. A recent experience I had in Illinois last month after attending the Abilities Expo left me frustrated. A friend who uses a manual wheelchair and I wanted to eat dinner together after the show called ahead to reserve a wheelchair accessible table. When we arrived, we were shown out to the back patio which seemed ideal until we got there and there was a step. The hostess apologized and we then went all the way around to the front of the building to get to another table. My friend sent an email the next day to inform them what wheelchair accessible means and how this can impact someone in her situation.
Being an advocate and ally as a healthcare professional means truly listening to the needs of the individual and working together. Whether it is providing direct therapy services or working on an equipment prescription remember, as the clinician it is our job to work WITH our client. I was recently reminded of this when meeting with a young lady regarding her request to demo a Motion Composites wheelchair. After providing her with a wheelchair and going through the differences, I saw in the trial wheelchair compared to her current wheelchair, I gave her some highlights as I saw them about things that she should try to look and feel for to compare. One major component being the size of the front caster. She had 3-inch light up roller blade casters on her current wheelchair. Upon returning after a couple of days to discuss her likes/dislikes of the trial wheelchair, we came down to the casters. Myself, as the “professional” gave all the clinical reasons for a better caster wheel, and she said, “I have to have the light up wheels, it is what gets people to talk to me in the wheelchair.” I was silenced and chastened by that comment. I was reminded that listening is the most important part of being an ally and advocate. I did my job by educating on clinical aspects AND by listening to the client about what was more important to her at that time and we were able to find 5” × 1 ¼” light up casters as an excellent compromise.
It is worth repeating: “In order to empathize with someone’s experience you must be willing to believe them as they see it, and not how you imagine their experience to be.” Brené Brown
There are many ways to become involved in advocacy. Ask your friends with disabilities, look at local chapters of United Spinal Association, Spina Bifida Association, Cerebral Palsy Foundation to name a few. Unite4CRT and the DIS/Ableist Network are two incredible organizations which welcome collaboration. Take time to read and sign when the request for sending a letter to a local representative about a bill that protects a Disabilities Act, Social Security or other social programs in your area crosses your social media. These small steps will go a long way in working with our friends, colleagues, clients, neighbors, and society in general. The disability community is incredibly diverse, all genders, races, and socioeconomic statuses are members, so let’s do what we can to be both an ally and advocate.