Living With DS: Then & Now (Day 4)

People with Down syndrome live very different lives now than they did one hundred years ago or even 50 years ago… in Canada anyway. Sofie came from a country that is many years behind Canada in how they view people with different abilities. They are very similar to how Canada was.

Then:
People with disabilities were not seen as real humans. They were hidden away from society and placed in to institutions. Parents were told that it was the best place for them. A place where they could be taken care of by the doctors and health care professionals. The parents truly believed they were doing the best thing for their children. Here is a link to a past post of a letter from a parent sending her son to Woodlands, the local institution that was phased out and shut down for good just 15 years ago.

http://www.afamilybecominghuman.blogspot.ca/2010/11/letter.html

Institutions were similar to prisons… big common rooms, cold walls, sterile rooms with little to no personal belongings. Food was served cafeteria style. The people who lived  there frequently had no concept of how food got made. It just appeared. There was no community inclusion, no jobs, no future. A few high functioning individuals were able to help with tasks around the institution, like laundry, but nothing outside the walls.

Staff were minimal and rotated. People were kept in cribs for their usually short lives and had mangled tight limbs because of it. Or they may have been locked up if behavior “required” it. Abuse was rampant. Care was based on what was easiest for the staff, not the individuals. Entire mouths of teeth were pulled if they bit anyone. Lobotomies where regularly preformed. Corporal punishments were acted out to the point of breaking body parts. I’ve worked with individuals from Woodlands who are afraid of running water because they would be sprayed with either cold or scalding water from a hose as a form of a shower and had undocumented scars. Death was imminent. The average lifespan of an individual with Down syndrome 60 years ago was just 15 years old.

This is a video of pictures of Woodlands after it had been shut down for 15 years…

Now:

Things have changed for our angels… at least in Canada. There is inclusion, respect and care. I’m not saying our society still doesn’t have some work to do and attitudes change, but we have come a long way.

Individuals with special needs and Down syndrome are raised with their families. Families are given support to aid in the extra challenges that they may face. They are included in typical classrooms and have goals to one day get a real job! There is wheelchair access almost everywhere too! (Inclusion is a bit of a larger and complex issue which I do recognize and am not going address in this post… stay tuned though!)

As adults, individuals may choose to stay with their families or follow the normal way of life and set out on their own. There are many options such as supported independent living, living in a home share setting with another family, or a group home if the needs are more complex.

Although many people in our society still see individuals with special needs as weak there is an attitude of respect from most.

People with special needs or Down syndrome born in other countries are not so lucky. This is part 1 of a documentary done on the state of the institutions in Bulgaria a few. There have been improvement since the media coverage of this documentary but definitely not enough. Surrounding countries have also not followed suite. This is where Sofie came from… I’ve read the current average life expectancy of a child with Down syndrome in Bulgaria is 8 or 9 years old.

This is a bit of a weird post to write and think about. It isn’t always pleasant thinking about how things where then, when we are mostly happy with the way things are now. This is something that is very real though and still affects many of our peers and people in our society. My home share sister, Maggy, was one of the few who was not placed in Woodlands, (she is 45 yrs old now) while her peers were. Her mother decided to keep here. Sofie would have seen this institutionalized fate if she were not adopted. She was already severely malnourished and neglected. She also has a scar that was not documented anywhere. I think it is good to remember and to keep moving forward. Support the healing and never go back.

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