Mobility is one of the most important, most overlooked, and most frustrating issue to overcome for someone in a wheelchair to face on a daily basis. When you have wheelchair, like an electric power chair, they tend to be big and bulky. They can weigh 300 pounds and up, making them too heavy for a person to lift on their own. They don't always fit into public transportation, and the price tag for a wheelchair accessible vehicle even in the used realm is a very pricey item.
Renting accommodated vehicles is also very costly. You'd be better off to purchase one, if you have upwards of $40,000. When you consider how much use it would get, even if it was just for visits to the doctor, errands for groceries and medications, and other daily needs, a wheelchair accommodated vehicle is just one of those things someone who utilizes a wheelchair simply cannot do without.
I have FSHD Muscular Dystrophy. I have a wheelchair, I'm 34, and although my daughter shares my diagnosis, she is a very active 12 year-old girl. Her symptoms are very minimal and she shows no physical signs yet.
Being on a budget afforded through social security disability, it doesn't cover much at only $700 or so a month. And since it's also not allowed for those on SSI or SSD to have more than $2000 in cash and savings, along with other financial restrictions imposed, saving for a new wheelchair accessible vehicle, or any mobility modification to accommodate my wheelchair for that matter, was out of the question.
I tried reaching out to my health insurance to approve the equipment I needed to accommodate my mobility issues, but unfortunately for me, mobility equipment for the use outside of the home is not covered what-so-ever through the Medicaid/Medicare health insurance.
I was referred to my local organizations, but that just provided a false hope. They all had denied to help me. It was then suggested to me to ask the department of transportation, my friends, family, churches or any one else to help me out.
I applied for loans, but was almost instantly denied because of my income.
We created a fundraiser site to try and gather donations which was unsuccessful. I then was entered into a contest to try to win an accessible vehicle for my wheelchair.
After two years of deploying every considered option, some that seemed realistic and some not so much, I was on a road to nowhere, all because I needed to find a way to acquire a wheelchair accessible vehicle now that I am permanently wheelchair bound.
The "support" for someone in my situation, especially being of low income on disability, turned into a shattered illusion. It's very difficult to have hope that things will get better and become normal again after you become wheelchair bound or otherwise mobile compromised. In the thick of things, that promise of help vanishes into a puff of smoke when you actually try to invoke it.
Unfortunately when you deny someone with mobility limitations the very tools that will make them mobile and independent, it's not just me that's affected. I have an over 300 pound electric wheelchair that I use in place of my legs. How is it that someone with a 300 pound electric wheelchair without the means to transport it from their home supposed to be independent?
And let's drop the attitude that the disabled are just being lazy or that they don't want to improve their situation. What's even more offensive is to suggest that "we" the disabled, like our position and choose to live this way.
My question is, would you? Most of those with disabilities are of low-income, and can and want to work but simply lack the mobile equipment or other accommodations and the opportunity. Employment numbers for those with disabilities is on a decline. One reason I would purpose is the lack of accommodations and the assistance to obtain them for their mobility and/or disability.
Being disabled wasn't a choice we just made one day. It is however something we must live with. We don't have the ability to choose to not be disabled. But believe me, we would if we could. We don't have the ability to chose to go without the very equipment we need to make our disabilities easier to live with. So why is it a choice to deny those with disabilities the equipment they require?
Instead of having the means to be self-sufficient via an adapted vehicle for my wheelchair so that I can run my own errands, take myself to my own appointments, buy my own groceries, gain an education and employment to be able to pay my own bills, my own taxes and afford my own mobile equipment...
I am dependent on disability and on others to take me to my appointments, run my errands, pick up my groceries and medications. I am dependent on others (when they have time to do so in their busy schedules) to manually break down my wheelchair into pieces and hoist them in and out of their vehicles after I've transferred from the chair into a regular seat.
Many disabled individuals are confined to their homes, or worse, in care facilities like adult foster homes, simply because they lack the means to acquire the equipment they need to accommodate a disability or injury. Many don't know their own talents or abilities because they weren't encouraged to become more or provided any other support to be more.
Forget it if we wanted more out of this situation. And it is just that simple. If we want to help those with disabilities, and if we want to inspire hope, and to dream big, then we need to change our way of thinking, change the way we help others, we need to own our promises and actually help those of us in the disability community with what we actually need instead of kept as a prisoner because of what we need.