Today the average lifespan of a person with Down syndrome is approximately 60 years. In the ’80s, the average lifespan of a person with Down syndrome was only 25 years. This increase to 60 years is largely believed due to the end of the institutionalizing people with Down syndrome. (globaldownsyndrome.org) There are many disgusting pictures of institutions of small children with disabilities being mistreated and neglected. There was this stupid idea that children like this had to be put aside and forgotten. Not enough people cared.
Because of neglect, abuse, lack of access to education and medical care, people with Down syndrome would die too early in institutions. Most people including most professionals considered it impossible for people with Down syndrome to live a meaningful life. The assumption was that people with Down syndrome would not walk properly, talk, feed themselves, dress themselves let alone work and go to school. They defined at birth to be a burden to marriages, siblings and families. They were not allowed to attend public schools and most people believed they should not be allowed in public spaces.
I’ve read about doctors who would refuse to perform lifesaving procedures, such as corrective heart surgeries on people with Down syndrome and cases where doctors considered feeding babies with down syndrome as a living procedure and let them starve. Other cases involving doctors and fathers working together to tell the mothers of the newborn babies with Down syndrome that their babies had died, when the babies were really just being sent way to institutions never to seen or thought of again by the family. Because of this mentality, people with down syndrome and other developmental disabilities died at an early age and it was blamed on their disability rather than the quality of life that was provided to them.
Thankfully the world started to change for the better around the ’70s and people with Down syndrome and other developmental disabilities were seen as human. Through the years, many institutions were closed down, and it was now expected that people with Down syndrome would live at home, go to school and have fundamental human and civil rights, thanks to ADA and IDEA. In the last three decades, we have seen so much improvement in the lives of people with developmental disabilities. Many of these individuals are graduating, getting jobs, getting married; overall living very healthy and productive lives. (if you want to read more about ADA and IDEA, visit our resources tab)
People who lived in institutions all of their lives have missed out on show much and were capable of so much more. Here’s an example: https://www.lifenews.com/2016/05/10/family-starved-32-year-old-man-with-down-syndrome-to-death-he-weighed-only-69-pounds/
Although for the most part, the U.S has gotten away from institutions, there are still some out there. and I think some are still needed. I currently work at one as a case manager for residents who all have developmental disabilities. When I first was getting ready to move to this job, soooooo many people were asking me why I would do this. My previous job was advocacy work for people with disabilities and their families. Me moving to work at an institution was viewed by a lot of people as moving backwards. Regardless I moved to this job because I thought I could make a difference and help people in a different environment. I believe some families really do not have an option but to put their loved ones in institutions like where I work. But, I also feel that some of the residents here should have never come and some should not have come so early in life. Regardless, my job is not to judge that, but rather make their lives meaningful and enjoyable while they live here.
I don’t think all institutions are bad but I can never imagine putting Joel in an institution. I think that there is no way that anyone can care for him and love him the way we do. In my opinion, as his sister, my siblings and I should step up to take care of him when my parent cannot do so anymore. I know not everyone feels this way but I do.
Here some excuses I have heard from other families of why sibling can’t care for their sibling with a disability:
– My other children do not ask for a handicapped sibling
– We have our own lives
– Too much work
– I don’t know how to care for them
– Our lives shouldn’t be like this
I hate when people talk like this, I really do. But in all honesty, people who think and talk like this should not be caring for people with disabilities. People who are like this end up on the news for caging their cousin with autism in the backyard, or starving their child who has down syndrome, or any of those horror stories you have seen on the news. People like this and of course ageing families are reasons why institution are still needed, but institutions should not be used as the first option for everyone born with different abilities. Thankfully families are more educated and have more options like independent living and other programs.
That’s it. Bye.