• Grace Robinson

Disabled, Dehumanized, and Discriminated Against: Life as A Disabled American

July is Disability Pride month in the USA, a month commemorating The Americans with Disabilities Act (ADA) that was enacted in 1990. The purpose of the ADA is to prevent discrimination towards the disabled population in America, and although this act has brought us a long way, we still do not have equal rights and opportunities. Discrimination against the disabled community is very much alive and kicking in America.


A little bit about my situation is that I am a 25-year-old female with a genetic disease called Mitochondrial Disease. This disease is progressive, meaning that I will continue to become sicker with age, one day eventually dying from it. Mitochondrial Disease is something that I was born with, not something I chose for my life. I have no control over this situation in any way, shape, or form despite my hardest efforts.


I was misdiagnosed until I was 20 years old, only getting this diagnosis after a very long and traumatic hospital admission. Up until that moment, I thought I would get better, finish my degree, and join the workforce. That didn’t happen. I ended up having to move back in with my parents due to the severity of my condition. I receive home nursing (as well as other forms of in-home services), am wheelchair bound, require home infusions and tube feeds, and have multiple doctor’s appointments a week. I’ve easily had over a dozen surgeries, spend about 25% of the year admitted to the hospital, and take dozens of medications daily. I spend my life trying to stay alive.


Because of my situation, I do not have financial freedom or much choice when it comes to healthcare. The US government does not recognize me as “disabled” due to the fact that I did not work full time and pay into social security for the required amount of time needed to collect SSDI. I am far too sick to work full time (or even part time) to get insurance through an employer and having a pre-existing condition prevents me from getting any insurance that is affordable, let alone one that suits my needs. In order to get the care needed to continue living, I go through the welfare program. That means I receive SSI and Medicaid benefits. Although these benefits help provide me with the care needed to survive, the guidelines put in place often keep the disabled community stuck in place, unable to make progress.


When you receive SSI/Medicaid benefits, you can’t have more than $2,000 in assets (with the exception of one house and vehicle) or you will lose your benefits. That includes cash, any money in your bank account, CDs, the value of your life insurance, stocks, and bonds. You can’t have fundraisers, inherit money, or try to save up for your future because you will lose your benefits, including your health insurance. All of this ensures that you stay dependent on the system.


If you were to get married to anyone that is employed and living above the poverty line (pretty much anyone who doesn’t collect government benefits), you lose your health insurance. The government doesn’t care whether or not you can go on your husband's insurance, (if he even has any) you lose your benefits regardless.


As a wheelchair user, there are many places I cannot go because of the lack of accessibility. Even if there is a ramp to get inside, many buildings still aren’t accessible. I cannot even guess the number of times when an “accessible bathroom stall” didn’t even fit my standard size wheelchair or the amount of times a business has roped off check-out lines, making it so a wheelchair doesn’t fit. Sometimes, I can’t even cross the street at a crosswalk because there is no low curb.


All public buildings constructed after 1990 have to be made “accessible” so people with limited mobility are able to enter. Unfortunately, businesses built prior to 1990 are grandfathered in and don’t have to make any renovations. That means it’s common to come across bars, coffee shops, stores, restaurants, museums, schools, churches, etc. that wheelchair users can’t enter! It is infuriating! And although businesses are required to make accommodations by law, many do it reluctantly and with little to no effort at all.


There are times where government events are held at locations that aren’t wheelchair accessible. How is the disabled community supposed to make our voices heard when we can’t even show up to the conversation? Decisions are made that affect our lives as American citizens, and yet, we can’t even get through the door!


Although it is illegal for employers to discriminate based on a disability, it is extremely common. Only 37% of disabled Americans (that are looking for work) are able to find employment compared to the 77% of non-disabled Americans. Still, they make an average of $5,000 less a year for performing the same exact tasks. Of these disabled Americans, 32% are part-time employees because they cannot find full time work, meaning, health insurance is not offered through their employer.


I have learned that being disabled in America makes you a second-class citizen. We are told to be grateful and to stop complaining when scraps are thrown our way. The programs we rely on are constantly on the chopping block, putting our lives at risk. The threat of our insurance being taken away is something we have to take seriously, because without insurance, we will die! We are constantly called “lazy” “free-loaders” and “parasites,” when we are just doing the best we can.


There have been countless times where I have felt less than human, not because of how I personally feel about my disability and situation, but because of how people treated me as a person with a disability. I have been called “entitled” and “unreasonable” for requesting a basic accommodation that a business is required by law to make. I take notice when “friends and family” post on social media calling people like me who rely on social programs “burdens on the system” or a “waste of space.” I am not the exception; I am exactly who you are talking about and I see what you really think about me.


I am disabled and proud, but that isn’t enough!


We need people to be more understanding and accommodating...


We need everyone to be a part of this fight....


We need people to treat us like the human beings we are....


We need people to give us a chance...


We need people to see value in our lives...


We need America to be proud of the disabled community...


We need America to stop treating us like second-class citizens.


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Grace & Mito

Grace Robinson

A Life Full of Grace & Mito

Chronic Illness Blogger

graceandmito@gmail.com

Pennsylvania, United States