Now, before you go thinking…oh gawd, please don’t let this be a political post, rest assured it’s not. There is an undertone that must be addressed regarding disabilities and funding at the very least, but to be honest, it’s never really mattered who was “in power” when funding for disabilities was in question.
As a society, there have always been certain communities that have received a stamp of disapproval. These segments of the community that are chastised seem to wax and wane, depending on the social climate. I will give a crude and unpleasant example. When soldiers returned from Vietnam, they were treated cruelly and openly by many.
While some volunteered for service, many were also drafted [more information]. Due to the anti-war sentiment at home, they did not always receive the “heroes welcome” that returning WWII and Korean War service members did in the past [more information].
Today, I truly believe that you would be looked at as if you had six eyes if you chastised our service members. They are honored members of society, given standing ovations in airports, discounts and free meals in many situations and a firm respect from a wide swath of the American population (and rightly so in my opinion).
No matter how you feel about those creating the issues that lead to conflict, our brave service members get their just due whenever possible. (I know that doesn’t mean they have perfect lives when they get back, nor do the families of those deployed and I am aware of the challenges in the military community, but this was just a broad example for this subject).
For MANY decades, hundreds of thousands and more born with or coming to have disabilities were treated as second class citizens (and still are in too many cases). Oftentimes, children with critical daily needs were most often institutionalized due to the lack of ability in the community for families to keep these children at home and allow them to thrive. It’s just the way things were done.
Certainly, there were many pioneers who shunned the notion that their children needed to be locked away and it was those people who planted the seeds of the disability rights movements we have today.
We still have a long way to go, as people use the word “retarded” to describe everything from someone who makes a silly/embarrassing statement, to a movie that didn’t meet their expectations. People who remark about the word being offensive are now relegated to the “triggered” or “snowflake” category that is so overused to say the least. I know, because I am one of them.
I don’t go off on some rage screaming about how it’s offensive, but even when I mention, “Hey, if you could maybe take some time to think about the word retarded and what it means to those who have children with disabilities, that would mean a lot”, I’m still told to settle my snowflake ass down. *eyeroll* There’s only so many people who will understand.
Providing adequate care for those with a myriad of disabilities has long been a battle hard-fought and rarely won. Funding and services are often tied in with SSI, SSDI and Medicaid, programs that are often met with social disdain, due to overworked caseworkers and the system’s history of abuse and fraud.
So, when someone legitimately needs services, say in-home assistance for someone who is bed-bound and needs hygiene services, they have to practically go to war to get the funding they need, often being led through so many hoops that some give up and do it themselves or go into debt in order to provide for their family member/loved one.
I saw this first hand by the thousands, when, a few years before my husband died, I worked in my state as a full time advocate for a national organization whose mission was to increase funding for those with disabilities of all kinds. I have spoken to senators, congressmen and governors. I have pleaded the case for funding on television and have written newspapers articles. While I do not feel that what I did was in vain, I do feel that many of my pleas fell upon deaf ears.
One of the issues I believe with this seriously underfunded community is the rising cost of medical services. I am not in a position to change that price point, but I do notice it. I recall one couple that I met during those years who were in their EIGHTIES, still caring for a son who was in his SIXTIES, living in their home. He was bedridden and needed full-time care. This couple basically gave up their lives to care for him. There were no lavish vacations, weekends away, day trips or other luxuries for them. Sadly, there are many who think this is the way it should be.
I have read/heard/overheard many disparaging statements over the years, including things like, “Well, if people want to raise a disabled child, they need to pay for it themselves”. Seriously people. I’ve heard that. I don’t think people set out to say, “Ok, let’s have a baby, but let’s make sure the child is wheelchair bound”. Some people become disabled later in life, suffer traumatic injuries for a plethora of reasons.
Sadly, this stigma exists today because of the high cost of services needed to give people with disabilities the quality of life they deserve. If you empower people, no matter what their status in life, they can excel in ways that will surprise you. I’ve read many stories of, for example, the autistic man who was told he’d never advance past a third grade reading level celebrate the achievement of a Master’s Degree. There are a thousand stories in the disability community and we need to find a way to create thousands more.
I certainly don’t claim to know HOW to go about it, but the next time you see a group of government officials standing together (with their separate pension, separate medical insurance, with separate being the operative word), we need to remember the couple who are trying to make sure that their child who needs oxygen to survive can order that next delivery without losing their home. We need to ensure that the autistic child who needs a reading tutor gets it, so they can keep up with their classmates.
We need to strengthen laws that protect the bullied and allow children with disabilities the opportunity to succeed in schools and programs that help them thrive and achieve everything possible. (First lady…your bully platform…crickets?)
Coming out of the dark ages, children and adults were moved out of the filthy, underfunded institutions where they were neglected and discarded as not worthy for “normal” society and in some cases, enjoy a life worthy of living. It is our responsibility to ensure that those who are different, who learn different, look different, function differently and more have a fighting chance at the quality of life we all want for ourselves and our children.