Home Valley Advocate What about us? 

What about us? 

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During the past several years, it is no secret that as a nation, we have become more aware and enlightened to the plights of various minority groups who have been fighting for acceptance within society — and all the intangible glory to which it represents. 

However, there is one minority group that has been left out of the equation entirely — the disabled.

It was not that long ago that children with special needs were brought to institutions by their families, often with nothing more than a suitcase, only never to see them again. Belchertown State Hospital, which permanently closed in 1992, was one such infamous institution in the Valley. The hospital was known for its inhumane conditions and poor treatment of its patients. The children put in the institution had disabilities ranging across the entire spectrum: from limb malformities as surgically fixable as a clubbed foot, to complex conditions such as Down syndrome and cerebral palsy.

Bacon Wilson attorney Hyman Darling has dabbled in disability advocacy law throughout his 40-year professional career. He was unexpectedly thrown into the field, while being responsible for managing several of the former patients’ complicated legal affairs after Belchertown State Hospital closed.

In order for each of the patients to receive health insurance from the federal government while in the institutions, the state came up with a plan to put every individual’s money into a trust. And upon their closures, these trusts were put into the hands of trust officers like Darling.

“Before I knew it, we had 300 trusts that we were administering for disabled people. And the good news is that (those places) are closed now,” says Darling, who is familiar with the varying degrees of trauma inflicted on patients.

I was born in 1999, several years after these institutions closed. Nonetheless, the glaring belief that the disabled population is the eyesore of society and are better to be “put away,” rather than being integrated into society, has seldom faded into the background for many.

When I was about 2 years old, my mom took me for a routine doctor’s appointment at Shriner’s Hospital in Springfield. Since I was diagnosed with my neuromuscular disability at a mere 10 months old, I have received the bulk of my care in Boston. But due to Boston being an 90-minute drive away, on a good day, in the event of an emergency, it is integral for the maintenance of my health to have doctors in western Massachusetts who are aware of my condition. 

While at this doctor’s appointment, the doctor pulled my mom to the side and unceremoniously said to her, “You know, there are places for people like Joanna.” My mom nodded, and out of respect thanked this doctor; needless to say, she never took me back to see him again.

My mom told me this story a little over two years ago, and it has been ingrained in my memory since. Now, I am forever grateful to my mom for disregarding his unwanted and frankly shocking advice, but I will admit that hearing the story was akin to taking a sharp needle to the heart.

The doctor’s advice is the epitome of an ideal that I have been consciously fighting against since I was old enough to be aware of my condition. One that dictates because we require more assistance than others, that we are somehow less worthy of the same quality of life that any able-bodied person is automatically granted. That we are not accepted by others within society, whatsoever, and in many cases are ignored.

COVID treatment

This premise has only been solidified in my mind throughout the past year, when even during a public health crisis, I have witnessed myself, along with the remainder of the disabled population’s health, not be treated as a priority. 

Case in point, in Massachusetts individuals with two or more comorbidities below the age of 75 were eligible for the COVID-19 vaccine until last week. The wait was too long, and left extremely vulnerable individuals in the lurch, due to our disabilities making the effects of catching the virus particularly frightening and the majority of us having to rely on caregivers to survive. 

I have been extremely fortunate to have people in my family who have been able to help me during this time, but most are not so lucky. And they have to live with the anxiety of catching the virus on a daily basis by allowing caregivers to take care of them and having to consistently put their lives at risk for any quality of life.

“This has been a real problem,” Darling says. “Because there has been no one to advocate for them, and they’re not given the same benefits as other people. I mean we try to do as much as we can, in terms of getting them the care they need, but with these COVID rules, you just can’t do certain things. … The only remedy to this, is to get these individuals vaccinated; in order to make them have a little more resistance to the (virus).”

Many local disability advocacy groups are doing their best to alert state legislation to this issue. The Arc of Massachusetts is one that focuses on advocating for individuals with intellectual developmental disabilities, and currently has a form on its website asking Gov. Charlie Baker to prioritize vaccinations for individuals in day programs and their caregivers. But if pushed through, it is only applicable for a fraction of the population; which leaves many vulnerable, once again.

Additionally, other states across New England have been much more efficient with vaccine distribution to the disabled population. So why is it that Massachusetts is lagging so far behind?

U.S. Rep. Richard E. Neal acknowledges the extent of these issues and has expressed empathy for the disabled population throughout his political career — since being an original sponsor for the Americans with Disabilities Act in 1990. His says the distribution of vaccines under the Trump administration was not treated as a national issue, whereas each state was entrusted to handle the issue independently. He has hope that President Joe Biden will, rightfully, make it a national issue in order to establish some kind of unity for who is in the priority groups to receive the vaccine.

In the meantime, Neal says, “I will encourage Governor Baker and others, who make these determinations, to prioritize those who are challenged (for the vaccine). Because we want to make sure that we fully integrate them into the daily routines of life that we all value.”

Over 15,000 people in Massachusetts, alone, have perished from COVID-19. The disabled population is running on borrowed time for, in many cases, their health and their lives. We need to be prioritized, now more than ever before.

Joanna Buoniconti is an English and journalism major at the University of Massachusetts Amherst.

Source: ValleyAdvocate.com