It’s an important subject to discuss.
This article hits close to home as I had a cousin I loved very much pass away in 2014. She had Downs Syndrome.
In spite of medical professionals when she was born dismissing her saying she’d never make 6 years of age & never have quality of life, she & her family proved them wrong time & again.
She taught herself to communicate using bliss symbols. She was also born deaf but very perceptive.
She was also one of the most loving people I’ve known.
I loved my cousin for who she was, period. I saw my cousin love & appreciate those around her just as deeply or even more than I did. She demonstrated that very clearly, more than language ever could. It was important for me to see that & learn that from her at an early age.
This was back in a time before there were widespread early intervention & mainstreaming programs where we lived. This was in the rural midwest where there are sometimes several hour drives to see specialists & not many resources to be had for any type of medical problem.
Still her family worked to give her a good quality of life. Sonya worked for it too. She had it.
So that’s why I do get sore when people with disabilities that affect cognition or communication, like Downs Syndrome, are automatically written off or discriminated against.
The easy assumption is that because they can’t speak or necessarily comprehend at a level deemed equal to “normal” societal standards they don’t have a quality of life worth preserving or are automatically written off as having less of one.
But the fact is they do in fact have just as much or more than the rest of us. They often have families & relationships that matter to them. They matter to someone.
It’s sad to see some of these statistics when it comes to transplant eligibility. Very upsetting because it’s not based on medical criteria. It’s solely based on societal aptitude. That’s not a fair measure of quality of life.
I firmly believe my cousin’s life was worth fighting for equally as hard as my own is.
Furthermore, no one goes through transplant alone, regardless. That’s why we have support systems. So to assume that compliance will automatically be adversely affected or diminished based on someone’s disability alone is not a valid argument either.
My cousin had an improperly functioning heart for much of her life that caused problems for her. Had a heart transplant been something that might have helped her, I would have stepped up to fight & help her & her family get the funding as they in turn have helped & supported me in my fight for lungs.
I wouldn’t have felt differently if any of this had happened with either one of us as children either, because I dearly loved her & I know she loved me.
She didn’t have to use words from a dictionary to show me that. She didn’t have to hear for her to see my heart or get to know me.
We could be apart for years & be just as excited to see each other as we did when we grew up together & lived closer.
Her quality of life would have been worth fighting for equally as hard as mine is.
I firmly believe & know that Sonya understood far more than she sometimes could convey or people who didn’t know her as well would give her credit for.
I have no doubt her family would have stepped up to find ways to help her through the process if transplant would have helped her situation. Much like they found ways to help her learn & grow at her own pace in her own time. She was not a source of shame in her family, she was a source of pride & joy.
I really hope this bill passes in Massachusetts & isn’t left to languish like it had been previously. I also hope similar protections are passed in other states. I’m glad that the passage of the ADA slowly but surely did get centers to reconsider these types of discriminatory decisions.
Disability isn’t something to fear, nor should it be used as a tool for discrimination or a skewed scale to “measure” quality of life.