By Cassandra Brandt
When I handed in my work boots for a wheelchair I knew I was going to be as broke financially as I’d been rendered broken physically. But I didn’t know this disabled body and the lack of finances to fund its pricey lifestyle would only be one part of the incredible challenge posed by complete quadriplegia. These are some of the challenges of living with disability that I’ve faced:
Physical
Everyday people with disabilities have a battle to fight with our own bodies. Whether it's navigating the challenges posed by limitations in motor function, coping with chronic pain and addressing secondary symptoms of disability, or being proactive with physician appointments and preventive care, we’ve got our hands full.
Financial
Disability is expensive. In addition to medical bills, prescription drug costs are outrageous, durable medical equipment is expensive, and medical supply costs climb fast. Accessible transportation and home modifications to accommodate mobility equipment can also be expensive. Then there is the cost of personal care attendants in the event that assistance with activities of daily living is needed. Private insurance plans don’t cover this resource.
Access
For many people with disabilities, government programs such as Medicare, Medicaid and Social Security can help cut the cost of disability. These programs have strict guidelines for approval, however, and they don’t cover everything. In some communities, resources are very limited. For example, in rural areas resources like accessible transportation and community based services may be severely lacking. Without these resources life can get lonely, and health can even decline.
Stigma
Maybe the biggest challenge faced by the people with disabilities though, is the attitudes towards disability from people without them. In my community, lack of knowledge about disability creates barriers to access. Many businesses aren’t ADA compliant, which means I can’t take advantage of their services. Transportation to medical appointments has to come from the city an hour away.
And often when I voice my complaints about access they are met with an attitude, whether it’s a business I cant get into, a transit company that won’t accommodate me, or even filing grievances against Medicaid for lack of resources available to me. I’ve even taken my case for transportation to the news media
"In my community, lack of knowledge about disability creates barriers to access. Many businesses aren't ADA compliant, which means I can't take advantage of their services."
I fire back against normalized perceptions that I’m not entitled to equitable services. I feel like people are defensive regarding their ignorance about disability, and this is unfortunate for the disabled community.
Rising to the Challenge
As an individual with a disability I have learned to be an advocate for myself and my needs. I familiarize myself with my rights, and I inform the parties entrusted with meeting my needs, whether it’s my Medicaid case managers, my healthcare providers or my home health aides, of that familiarization. I also try to normalize disability in society. Disability doesn’t discriminate; it can happen to anyone. That’s why it’s in the best interest of everyone to enforce and advocate for accessibility and equity for all.