Ep 2: My American Nightmare
This episode focuses on the catch 22's the American government forces people with disabilities to face.
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Transcript
Mandi: Mandi Frantz here welcoming you to my podcast - Find Your Beautiful: Life Through the Eyes of a Christian Disabled Woman.
[Upbeat Background Music]
Mandi: A quick note before I jump into today's episode. I decided to change today's title because I think this one is more fitting. Since I'm new to this whole podcast thing, I'm really grateful for your flexibility. Now, on with the show.
[Bling]
Mandi: I started paying rent when I was 16 years old. I paid $400 a month to sleep in a small room with my older sister. I shared every room in the house with 4 other females. My landlord? You guessed it, my mother! Now before you go passing judgment on my momma, for this at least, you need to understand the situation. I skipped third grade and my birthday is in July. This means that when I graduated from high school in June of 2004, I was only 16 years old. I had a scholarship to NYU, though poor accessibility to transportation kept me from attending, but that’s a story for another episode. I was essentially ready to enter the proverbial “real world,” but finding the typical part-time job for a teen was not an easy feat. No, I wouldn’t be flipping burgers, selling popcorn or movie tickets, and there were no Walmarts close enough for me to be a Greeter. In no way am I suggesting that these jobs aren’t important, or that they are only for teens. I’m simply acknowledging that these positions are the typical jobs that help young people pay their way through college. Honestly, I would have been honored to have any of these jobs, but my disability made them unrealistic. My mother couldn’t afford to have me dorm, nor were most colleges really discussing this as an option for people with disabilities at the time. My mom could barely afford my just over $4000 per year tuition to attend a City University. She was essentially a single parent supporting herself and 4 daughters ranging in age at the time from 8 to 19 years old. Unfortunately for us, my mom’s hard work at 3 different jobs meant we weren’t considered legally poor, living under the poverty line. We really needed the $400...Wait a minute, I’m doing it, aren’t I? I’m justifying something that shouldn’t need justification for.
As a disabled individual in America, who started working part-time summer jobs as a peer tutor at the age of 14, who graduated high school early as Salutatorian, who got accepted with a scholarship to a top American University, who qualified for SSI, I was only able to get these funds if my mother legally disowned me. I’m not kidding! My mother had to say she would not support me in any way, no housing, no food, nada, unless I paid like an adult. This is the American system I live in. This is just one example. Today I’m going to share some of my American Nightmare with you!
[Mandi voices Ad (ads change and will vary)]
[Scary Tune]
Mandi: Despite what you may think after today’s episode, I am proud to be an American, especially one born when I was. When I was 5 years old, the ADA was signed granting me the right to be treated, not just as an American, but as a human in America. While I think it’s a sad truth that we need laws to tell us how we should treat, and not treat people, I’m grateful for the liberties I’m granted. What I’m not enthused about are the catch 22’s and hoops I’ve had to jump through to assert my humanity, prove my productivity, and claim my stake in the pursuit of my American Dream.
Let’s first talk about the way disability is defined in America. When it comes to financial benefits, and healthcare services, America allows the Social Security Administration to define disability. This office pretty much says that an individual is considered disabled if they are unable to perform substantial gainful activity. They go on to define substantial gainful activity as, “working paying minimum wage or better.” If you don’t already see a huge issue with this, please allow me to educate you. By this definition, I am not disabled!
Ok, here is the challenge with a podcast, you can’t see me. I have a disability called Arthrogryposis. It is a physical condition that severely limits the use of my hands, arms, and legs. It affects all of the joints in my body below my neck, and caused me to be born with very weak and atrophied muscles. I use a motorized wheelchair to get around and depend on people for all of my activities of daily living, like eating, bathing, toileting, etc, etc. My disability is often the first thing strangers notice about me. My hands look like paws and my feet look like golf clubs. It’s pretty impossible to miss! Yet, I’m also the Executive Director of a nonprofit. As I mentioned earlier, I’ve been “gainfully employed” since I was 14. However, none of this matters to the SSA. Nope, to them all that matters is if I can make money and pay taxes.
Why does this definition matter? First, have you seen the cost of healthcare? I know many people without disabilities who can’t afford it. When you qualify as disabled under the SSA, you automatically qualify for Medicaid. This is incredibly important to people with disabilities because Medicaid covers the crazy costs of our home care, meaning our home attendants, personal care workers, and home health aids. It covers the cost of our equipment, like power chairs, shower chairs, toilet seats, even housing modifications so our homes can be accessible. Now, you can have Medicaid without receiving financial benefits from SSA, but you really do need to know your stuff and be, or have a strong, advocate to keep it. On top of this, Medicaid also has financial caps and will cut you off the second you make a penny more than their limit.
Secondly, and I think more importantly, when we talk about the need to change society, the SSA’s definition of disability perpetuates wrong, negative, prejudiced stigmas about people with disabilities. Basing a disabled person’s medical and life needs on their ability to work and get a good job is absurd! This enforces the idea that many ignorant people have (and I mean actually ignorant, as in not having knowledge about something), that people with disabilities are sitting at home doing nothing, but twiddling their thumbs, if they even can. This enforces discrimination in the workforce, making it seem like people with disabilities shouldn’t be there. Sadly, this definition makes people with disabilities feel like they can’t, or shouldn’t get out there and chase their dreams, like they can’t live “normal” lives.
This leads me to the catch 22 I live in. The more successful I become, the more afraid I am because the factors in my life that are there to ensure my success can be stripped away. The very services that allow me to be independent, that allow me to provide for my family, that even allow me to pay taxes are at risk. By the way, these financial caps I've referred to are inclusive of my income from my spouse, in the same way my mother’s income impacted my ability to get SSI. A person would have to make a huge, and I mean hit the lotto huge, income bracket jump to be able to pay for all the services and equipment most people with disabilities need. It’s unrealistic! So, I can live in poverty, doing nothing at home, and receive my services and life sustenance through the government, or I can get rich quick to lead a “normal” life. Not really a choice is it?
Now that I hope you have some understanding of the conundrum I, and many others, live in, let me tell you that my life is Beautiful! Perfect it is not. I’m constantly fighting for the basics of what I need from this country, but like I said in last week’s episode, I’m winning. Some of the concessions I’ve made include having a stay at home husband, who is my primary caregiver and cares for my kids. I’ve had to have awkward conversations with my Board of Directors about keeping my salary below the cut-off line. I’ve gone to fair hearings and argued for my rights hundreds of times. I’ve educated myself on my rights, my ability to appeal wrong decisions, and I’ve learned to respectfully fight. The fight is constant, but I’m winning. It IS possible to have the American Dream. It IS possible to Find Your Beautiful!
[Sudden Transition Sound]
Mandi: I want to know what you think! Can you relate to my story in any way? Do you find this idea of the American Dream to be much harder to achieve than it should be?
Go download the Anchor Mobile App, so you can send me up to 1 minute voice messages with your responses and any questions. Your message might even get featured in an episode!
If writing is more your thing, you can email me at th3mandibox@gmail.com, or find me on social media at MandiboxBeauty.
[Mandi voiceover to 'Compton' music]: Tune in to next week’s episode titled, “Trapped Where I’m At’,” where I’ll continue the discussion about the American System, specifically focusing on relocating with a disability and the lack of support for caregivers. 'Til next time Beauties!
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