This article will be published on DisAbility Rights Galaxy on October 22, 2014.
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True or False: Historically in the United States, people with intellectual or developmental disabilities, such as Down syndrome, have had high levels of educational, employment and social opportunities.
False. Historically, people with intellectual or developmental disabilities have been subjected to sub-standard institutionalization, and to barriers to full education, employment, and socialization. However, thanks to the passage of laws such as the Individuals with Disabilities Education Act, the Americans with Disabilities Act, and several other landmark civil rights laws in the U.S., this has dramatically changed for the better over the past 50 years.
Tim’s Place in Albuquerque, New Mexico is no run-of-the-mill breakfast and lunch restaurant. In fact, there are not many restaurants in Albuquerque or on planet Earth quite like Tim’s Place. The owner dances into work every day, tells his cooks how much he loves and appreciates them, and the employees are happy. Every meal is served with a free hug, and the restaurant owner is famous locally and nationally for his pleasant disposition and ability as an entrepreneur. The most impressive part of the story, however, is that the owner opened the restaurant when he was only 24 years old and has already served more than 42,000 customers.
Tim Harris owns Tim’s Place, a restaurant that has been his pride and joy for four years. He’s had incredible success growing his business after earning degrees in Food Business and Office Skills in 2008 from Eastern New Mexico University. Tim was the homecoming king at his high school by a record margin, has dozens of gold medals to his name, and has made a name for himself in the Bahamas for his ability as a fisherman.
Had Tim Harris been born earlier, however, none of this would have been possible. Tim has Down syndrome, a disability caused by an additional copy of chromosome 21 in a person’s DNA. Down syndrome is a congenital condition, meaning that it is present at birth. The condition causes physical and intellectual impairments. Down Syndrome Education International estimates that over 220,000 children are born each year worldwide with this disability.
As is the case for many people with disabilities, in the past, people with Down syndrome were subjected to many forms of social and medical mistreatment. In 1929, the life expectancy for an individual with Down syndrome was only about 9 years. Children with Down syndrome were rarely given the chance to lead a full and functional life before the late 1900s. Records show that many babies who had Down syndrome were, instead, being either euthanized at birth or committed to institutions. Euthanasia was more common abroad than in the United States. Many Americans of the early 20th century fully supported the ideals of euthanasia, and in some cases even envied the policies of Nazi Germany. The superintendent of Virginia’s Western State Hospital expressed these sentiments in 1934, writing to a local newspaper that,“The Germans are beating us at our own game.” Here suggested was the idea that euthanasia of people with congenital disabilities was a practice approved in American medicine and society. This is supported by the fact that Nazi doctors often turned to American eugenicists for consultation (Down Syndrome Uprising).
For those who escaped euthanasia, many were institutionalized in the early 20th century. Institutions for people with developmental disabilities were often squalid, decrepit places in which children were warehoused away from society, out of sight and out of mind. The conditions of such institutions are discussed in detail in the accounts of places like Willowbrook State School in Staten Island, and books such as Clifford Beers’ A Mind that Found Itself. Residents often endured overcrowding, minimal support services, and inhumane abuse and neglect from doctors and attendants alike. This system of institutions would remain dysfunctional and cruel until at least 1972, the year of Geraldo Rivera’s journalistic investigation of Willowbrook.
In many ways, these issues have vastly improved today. Life expectancy for individuals with Down syndrome has increased to roughly 60 years, an increase much of which has occurred in Tim Harris’ lifetime. Tim was born in 1986, just three years after life expectancy for people with Down syndrome had been estimated at 25 years.
Despite people living long healthy lives with a wide range of community supports, however, overall births of babies with Down syndrome are on the decline. Even in 2007, it was estimated in a New York Times report that more than 90% of women who discovered prenatally that their child had Down syndrome chose to terminate their pregnancies.
Thankfully, such numbers have begun to steadily change. According to an article by Adam Wolfberg written for The Atlantic, senior consultant Jaime L. Natoli of the Southern California Permanente Medical Group’s department of clinical analysis claims that “Families have significantly more educational, social, and financial support than they had in the past. For example, from a social standpoint, women of childbearing age are from perhaps the first generation of people who grew up in an era where individuals with Down syndrome were in their schools or daycare centers … a level of exposure that was very different than in generations prior.” (Natoli, via The Atlantic).
The life of Tim Harris is one of value and fulfillment, and his experience is becoming more and more common. People with developmental disabilities are more often gainfully employed and living fulfilling lives than ever before, achieving more than many people expected. While there is certainly more work to be done, opportunities to live a long, healthy and interesting life are increasingly available to people with intellectual disabilities such as Down syndrome in the United States.
Do you know a person who has Down syndrome?
What stigma do you think surrounds Down syndrome?
If you know somebody with Down syndrome, would you consider them to be a contributing member of society? If not, what do you think prevents people with Down syndrome from contributing to society?
What barriers do you think a person with disabilities faces? How do you think these barriers arise? Why do you think these barriers exist?
Do you think that people with Down syndrome or other intellectual disabilities today have the same opportunities as people who don’t have those disabilities?
“About Tim.” Tim’s Place. Tim’s Place, Web.
“History of NADS.” National Association for Down Syndrome. Web.
“Down Syndrome Facts.” National Down Syndrome Society. Web.
“Longevity and Down’s Syndrome.” The Down Syndrome Medical Interest Group. Medical Library, Web.
“About Down Syndrome.” Down Syndrome Education International. Down Syndrome Education, Web. <http://www.dseinternational.org/en-us/about-down-syndrome/>
Mandal, Ananya, M.D. “Down Syndrome History.” News Medical. Web.
Wolfberg, Adam. “Why So Many Babies Are Still Being Born with Down Syndrome.” The Atlantic. N.p., 2 Apr. 2012. Web.
“A Brief History of Down Syndrome, Part 6.” Web log post. Down Syndrome Uprising. 30 Oct. 2012.