This is a really tricky and sensitive topic in the disability community. If you live with a severe physical mobility impairment you are probably in one of two categories. Either you are on government benefits and don’t work or can only make a very small amount of money per month OR you have created a career for yourself. This means that you pay everything out-of-pocket and on paper it looks like you make a fair bit of money.
I am in the latter category. I have spoken with hundreds of individuals and due to so many medical challenges or life situations it is, more often than not, the norm is to be a slave to the governmental system, which is harsh in and of itself.
However, I do make a decent living, support myself, and pay 100% of everything out-of-pocket including full-time private duty caregivers, health insurance costs, mortgages, accessible vans, etc.
I have seen quite ferocious back and forth in some of the disability community forums where folks on government support criticize or tell folks with disabilities who make 100% of their own living “what do you have to complain about, you make a lot of money.”
Yes, BUT …. what you don’t see –
My livelihood depends upon my health. When I don’t have any medical nightmares looming over my head, I can work full steam ahead. However, if I run into any issues and cannot work, I do not get paid. I do not have a cushy corporate job with amazing benefits or retirement plans. I am a consultant.
I have to rely on myself, which means keeping my health up, working through immense chronic pain whether I want to take the day off or not, and I have to push harder and faster.
My life is expensive, many spinal cord injuries lives are expensive, especially if you are a quadriplegic and need full-time care. On paper it looks like I make a lot of money, but if you whittle down all the costs in my life — at the end of the day I struggle too.
I sometimes meditate into fantasy land and think about all of that money I earn going out for disability costs and what I could do with it if I could just be able-bodied and travel. However, this is not my reality. That’s okay though, it’s just life.
I recall this one time on one of my groups when someone said they made $80,000-$100,000 and then a host of folks asked what on earth they are were complaining about. I know that seems like a lot of money, but with a severe physical disability – it’s just not. Truly.
There was so much negativity and all I could think to myself was “we need to be demanding more within society with respect to livable wages with disability.” I suppose what challenges me is that we should be building each other up in the disability community and promoting each other to make more money in order to improve our livelihoods. I think this speaks to a larger systemic issue.
Many folks with disabilities are getting paid subpar wages, which is not enough to survive and get off government benefits, but many companies think they can get away with paying us less because we can only make a certain amount of money if we are government benefits.
This HAS to change, but we first have to change the narrative within our own disability communities.
This is also stands true in many diversity communities. How can we expect society to take us seriously or make meaningful change if we are fighting and criticizing each other within our own communities?
Let’s get on the same page people, build each other up, and not tear each other down. There’s enough of that in this world. Be kind, be courteous, and try and to be empathetic to another person’s situation.
You never know what’s under the hood of a person’s life if you don’t have open and honest conversations.