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Living with a “Disability” in a “Perfect” World

Jun 4

Posted by: ACHA
6/4/2012 2:04 PM  RssIcon

By Stephie Goldfish

Lately, I’ve been thinking about society and about our standards we set in place for our future generations.

We have the haves and have-nots, we have the rich and poor, we have those we consider from very fortunate circumstances and those we consider from less fortunate circumstances. Our society claims that we are a civilized nation where anyone from any of these backgrounds can reach his or her dreams or potential no matter what their lot in life.

Lately, I’ve been kind of angry about how it all seems to come down to the size of our bank account.

Over a month ago, on a visit back to my mother’s in my hometown, somehow the conversation led to me being on Social Security Disability Income (SSDI), and how BIG, to them, my income seems compared to some of my family members and friends.

It’s true. I do receive SSDI, but it is based on the seriousness of my congenital heart and lung disease and, by the medical community expertise, I am considered 100% disabled.

I met a mother whose 17-year-old daughter was in an auto accident (not her daughter’s fault). Her daughter, who was left paralyzed and in a wheelchair, receives a very small Social Security Supplemental Income (SSI) check. The mother was unsure if her daughter was going to be able to go on to college and live independently on her own. I sensed this mother’s pain and anguish, and the indignation of such a small amount for her daughter to try living on.

Remembering back when I was 17 years old, and getting ready to graduate from high school, I felt devastated to find out about my heart problem, even though I had severe symptoms all of my life. Although I was eligible to receive SSI, it was also a small amount.

Some of my family members and friends may think the amount I now receive on disability is outrageous, but if you take into consideration I went on to art school and when you consider my work history when I could have continued on SSI instead, what they say and think is unwarranted.

And, as far as my so-called BIG whopping check that I personally receive, I feel that this income isn’t even what I could potentially be earning, if it weren’t for my disability and limitations. Plus, I know that I really could have been eligible for SSI much sooner, but no doctor, nor family member, nor anyone else found my CHD until I was 17 years old.

I agree that the system is not perfect and it’s unfair in specific circumstances. I also feel the system needs to be overhauled in order to adjust to disabilities that happen at such a young and vulnerable age.

Sadly, our society bases a person’s sole worth on money.

Lately, I’ve been feeling that a person’s worth should be measured on their honor, commitment, endurance, and how they handle a setback or overcome a difficult situation. Lately, I’ve been thinking about the dreams the young or old have despite their circumstances.

And, I would like to remind everyone that great things have been done by people young and old who really didn’t have money in the beginning or who do very wonderful things, yet did not receive money at all or their work wasn’t a profit until after they died.

So, although we need money to live, lately I’ve been feeling money shouldn’t be the focus or measure of a person’s abilities.

Stephie Goldfish, aka Stephanie Hodgson, was born with a large ventricular septal defect, but it wasn't diagnosed until age 17. Since her defect went unrepaired, this resulted in Eisenmenger’s physiology, and she has developed severe secondary pulmonary hypertension. Stephie is an artist who graduated at the top of her class from The Art Institute of Pittsburgh; she is currently pursuing her love of writing, and writes short stories and poetry, as well as nonfiction. Learn more at her website and personal blog.

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