I have been seeing some absolutely disgusting comments by people in the LGBT community towards people with disabilities who are LGBT, as well. There is a level of classism in the LGBT community that is heart-wrenching. For a community that was discriminated against so much, how quickly they forget. I have seen so many people telling people with disabilities to get a job, and to quit whining about needing services or disability benefits. It isn’t just the LGBT community. Society in general is very ugly to the disability community.
No one understands until they have walked a mile in our shoes. It is a massive misconception to say that people with disabilities are freeloaders. Many of us have jobs. Those of us with the most severe disabilities often cannot earn a lot of money, so our jobs do not pay a lot. We are also often highly educated, but in order to get needed services, life and death services even, we cannot make a huge amount of money, so we have no choice but to have lower paying jobs.
When I was helping to set up the nonprofit NMD United, we gave a survey to people with neuromuscular disabilities, and what we found was consistent with this. Most of the participants were highly educated, most with at least a bachelor’s degree, though many with PhDs, JDs, or Masters degrees. At the same time, the average median income was around $20,000 a year, and participants cited that the reason for this was they had to keep their home healthcare services.
A lot of people seem to think that living with a disability requires no extra spending, at least not at the level it is. How sadly mistaken they are. I am going to try an experiment, and I hope you will follow along.
To start the experiment, I want you to look at your current income.
You have a disability. Since I understand my disability the best, let’s say you have Spinal Muscular Atrophy. You require a wheelchair to get around. You cannot do any of your ADLs (activities of daily living) such as getting out of bed, showering, dressing,, etc. without help. With the right support, you can have a job. So, for the experiment, the government has said people with disabilities no longer qualify for any health care services or insurance that pays for equipment. You have to pay for it out-of-pocket, or else your partner has to take care of you financially, and do it themselves.
To start, you need a a power wheelchair, so every five years you need an extra $30K. Power wheelchairs get run down from daily use, so every five years they need to be replaced. You also have to pay for tires every year, and new batteries every year, which is an additional $250-$500.
You need something to sit in when you are bathing so that’s an additional $1000 every five years. You may also need an additional toilet option, because you can no longer sit on the toilet without falling over, so that is an additional $2000 every five years. You need a lift, because it is too dangerous to lift you out of bed, on the toilet, etc. That is an extra $2700–$5000 every five years.
You require 24 hours of care, seven days a week, because you take medication, and maybe you have a trach. You cannot dress yourself, get yourself on the toilet, brush your teeth, brush your hair, or shower without help. You need help eating, you need help getting out of bed, and need to be positioned in your wheelchair every few hours. You need to have someone move your arms if they fall off your wheelchair controller, and so on and so forth. Using the amount that Medicaid pays for this experiment, that is an additional $240 a day, because Medicaid pays about $10 an hour depending on the state. That is an additional $1680 per week or $6720 per month. Mind you, this is several thousand dollars cheaper per year, then the option of living in a nursing home on the taxpayer’s dime, which is the only other option most people have. Nursing homes cost taxpayers hundreds of thousands of dollars per year, per person, so keeping us in our homes is much cheaper. It also allows us to contribute to society as consumers, workers, etc.
You take medication, which is over $500 a month.
You have a BiPAP machine, which you need to sleep. There is an additional $500 or $600 every couple years. Plus every single month, you need to replace some supplies. Every three months, you need a new mask. So that’s about $100.
You also have to get gloves and other medical supplies, in order for people to safely work, and take care of you. The monthly added expenses just keep adding up.
You also have to get a wheelchair accessible vehicle because public transit is unreliable, and you will lose your job if they do not take you to work in time. It has to have a wheelchair lift or ramp. Maybe you live in a rural area where there is no wheelchair public transport, so without a van, there is no work. For a new vehicle, you’re looking at $60,000. For a used vehicle, $30,000-$40,000. Now, the used van will only last about five years, if you’re lucky. The new van will probably last 7 to 10. Yes, wheelchair vans cost more than most luxury cars.
This is not counting the cost of therapy to help you stretch your body, anything you need for pain management, and various other accoutrements you generally have to pay out-of-pocket for, to make yourself feel more comfortable sitting down all the time.
Now, add in all the current bills you have…food, clothing, groceries.
Having figured out your cost of living, as a person with a disability, please tell me you and/or your partner can afford this out-of-pocket? Unless you are a millionaire, you are lying if you said yes.
People with disabilities NEED these services. Without them we have no choice but to go into a nursing home. As I mentioned above, that is incredibly expensive. It costs the taxpayers way more to do that, than it does to help us stay in the community. In the community, we can be consumers. We can get jobs. We can contribute to society. Well, many of us can.
I don’t think it is fair to shame a person with a disability who has not worked or cannot work because of their specific disability. I have been working almost my entire life, mostly low-paying jobs, despite going to college. I’m not asking people to pay my bills. I’m not asking for a vacation. I’m asking for the tools I need, to succeed. However, for those with serious disabilities who cannot work, I think it is wrong to shame these individuals, because it is not their fault they cannot work. They depend on things like SSI to survive. They contribute to society in many other ways, and deserve to be a part of our society.
Living with a disability is insanely expensive. I just wish people would not be so judgmental. This could be you, tomorrow. Nearly every single person experiences a disability at some point in their lives. You should care about disability rights, before it happens to you, because by then, it is too late to help the situation.
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