Guest columnist Joanna Buoniconti: For disabled, a worry about the future

Published: 3/31/2020 10:53:31 AM

One in four Americans today are either born with a disability or will experience a tragedy that will leave them handicapped.

I am one of the ever-expanding population of those who were born without the ability to walk, a fact that has always seemed to greatly compromise my opportunities for success. But while there are many of us, our need for systemic change has been largely ignored.

Growing up, I knew that the government’s plans for disabled people were not fair in the slightest. But it wasn’t until my 18th birthday, when I spent the morning applying for Supplemental Security Income that I would fully comprehend the constricting weight that these policies would have on my already frail body for the rest of my life.

In Massachusetts, in order to collect disability payments ranging from $500 to $700 a month, you cannot have more than $2,000 to your name. That alone was largely problematic considering that I was due to start college at UMass Amherst where the tuition for an off-campus student costs $15,000.

Fortunately, I had spent much of my free time during the spring term of my senior year applying for scholarships and had accrued a healthy bundle by the time graduation rolled around. And I also had parents who were willing to help me with the expense of earning an education and following my dreams.

In my IEP, or individualized education program, meetings as far back as I can remember, I had listened to my school administrators describe me as “the exception to the norm” — because my disability affected my body, but not my brain, because I was intelligent, and, more importantly, because I was lucky enough to have a mom who would go to any length to advocate for me. But not everyone has that.

It has become normal in our society for disabled people to be viewed as “less than” able-bodied individuals. And due to the fact that we are inherently seen as less valuable, addressing the very real issues that we face on a daily basis is pushed to the side.

And this presidential primary season has proven, so far, to be no different.

With the start of 2020, a newfound hope emerged that change was finally on the horizon for the disabled population — change that would end the outdated policies that limit us more than our disabilities do. That hope quickly dissipated as many candidates dropped out of the race leading up to and in the days following Super Tuesday.

Former presidential candidate and Massachusetts Sen. Elizabeth Warren’s disability plan was most widely accepted by the disabled population, followed by Bernie Sanders’ plan, with Joe Biden and Donald Trump’s coming in last.

Warren’s plan was different because she actually hired disabled people to be a part of her team, as she consulted with them and members of the community to draft a plan that would be considered a blueprint. None of the other front-running current and previous candidates had disabled team members helping to draft their plans. And Warren’s plan centered around the fact that the disabled population receives the brunt of society’s biggest issues, including the lack of affordable housing options, access to health care and financial stability.

Instead of the government completely cutting benefits once you exceed the minimum monthly income, Warren proposed indexing the inflation so that they would gradually balance out. In her plan, she devised an offset for every $1 to $2 earned above the income threshold to raise the income limit, effectively giving the disabled more financial freedom.

Many of the other candidates proposed a gradual decrease of benefits, which would only succeed in slowly depriving individuals of the services that they need to survive.

Due to my neuromuscular disability, I require 24-hour nursing care to survive. I have had to be careful not to apply for paid summer internships during my three years in college because if I did get an internship that paid $15 an hour, it would put me over the designated income level, and I would risk losing my nursing care.

I’ve seen it happen. A friend of mine who has the same neuromuscular disability that I do got her personal care attendant hours cut as a result of an internship and had to go to court to protect her rights.

There is a little over a year until I graduate, and as each day passes, I am becoming more anxious about what my future will hold. I have worked extremely hard throughout my college career to maintain good grades while completing internships. I want to have a career. I want to contribute to society. However, if I get a job after graduation, that does not mean that I’ll be able to support myself and pay for my caregivers.

As it is set up right now, disabled people are rewarded for being dependent on the system. I don’t know what the solution is exactly, but the remaining presidential candidates talking about it with disabled individuals would be a good place to start.

Joanna Buoniconti is an English and journalism major at UMass Amherst.
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