Friday, November 21, 2014

The ADA is a Beginning; But Has it Gone Far Enough?

I've made the argument before, that the disabled are the hidden class of people in the United States that still have bias and prejudice heaped on them.  It is so much part of our culture that even today it largely goes unnoticed.

Most of you younger folk may not realize that there were no civil rights for the disabled as a protected class of people until the 1970s.  Prior to this time, the disabled were routinely shut away, institutionalized and marginalized in society.  In 1975 The Developmentally Disabled Assistance and Bill of Rights Act became law in the U.S., and it provided federal funds to programs serving people with developmental disabilities and outlined a series of rights for those who are institutionalized.  There had certainly been other legislation passed prior to this time, but this was the first (imo) far reaching law effecting the rights of those with conditions such as Autism and ACC (which, ACC, was not even understood or recognized yet.)

This legislation provided that  people with developmental disabilities have a right to appropriate treatment, services, and habilitation in the least restrictive setting that maximizes developmental potential, and specified that public funds should not be provided to any residential program for people with developmental disabilities that conflicts with, and does not meet, the minimum standards for nutritious diet, medical and dental services, prohibition of physical restraints, visiting rights for relatives, and compliance with fire and safety.

Prior to this time it was a nightmare for many of us living with a DD. At the time this legislation passed I was all of 13 years old, and conditions for the "school" I was in were abominable.  I was sent to the Archie F Hay Village School for the "Emotionally Disturbed" (I deeply resent that title) for the entirety of what would have been High School and some of Jr High.  Even after the passage of the law our treatment was pretty ugly.  Students including myself were regularly tied down with restraints, put in solitary confinement (read: padded cells.)  I myself had 5 full grown men sitting on my 95 lb frame restraining and suffocating me, shoving my head into the floor...many times.

You may think of the 1970s, then, as the dark ages.  But the sad thing is this treatment still largely occurs today.  On a regular basis I hear of "schools" being brought up on charges for the abuse of students.  I have greatly suffered from this.  It is something very painful to talk about.  I have been diagnosed with PTSD because of what happened to me,  I still have night terrors and nightmares about being beaten and restrained. Even though this law had been passed "schools" still regularly abused their developmentally disabled students.

In 1984 this law was amended to include the following goals:

  • Independence: The extent to which people exert control and choice over their own lives.
  • Productivity: Engagement in income-producing work.
  • Integration: Using common community resources, participating in community activities with persons who do not have disabilities, and residing in homes or homelike settings in the community.
One thing is sure (in my personal experience) that one can pass all the laws in the world, but I'm of the opinion that you can't really legislate morality.  Both the public and private sectors still had barriers to optimal living for the physically, mentally and developmentally disabled, and it is still so today.

In 1990 The Americans with Disabilities Act became law, and it provided comprehensive civil rights protection for people with disabilities. This law was the most sweeping disability rights legislation in American history. It mandated that local, state, and federal governments and programs be accessible, that employers with more than 15 employees make “reasonable accommodations” for workers with disabilities and not discriminate against otherwise qualified workers with disabilities, and that public accommodations and commercial facilities make “reasonable modifications” to ensure access for disabled members of the public, and not discriminate against them.

Yet, as I said, bias, intimidation, pity, ridicule and dismissal are largely how the ID'd and DD'd to date.  Granted it isn't the 1970s and things have changed a great deal, but the shift that needs to happen is more so in the collective mind of the country, than it is its laws.

On March 15, 2011, new Americans with Disabilities Act rules came into effect. These rules expanded accessibility requirements for recreational facilities such as swimming pools, golf courses, exercise clubs, and boating facilities. They also set standards for the use of wheelchairs and other mobility devices like Segways in public spaces, and changed the standards for things such as selling tickets to events and reserving accessible hotel rooms. The new rules also clearly defined “service animal” as “...any dog that is individually trained to do work or perform tasks for the benefit of an individual with a disability, including a physical, sensory, psychiatric, intellectual, or other mental disability.” This portion of the law also states that the services the service animal provides must be “directly related to the handler’s disability” and dogs that provide only emotional support or crime deterrence cannot be defined as service animals

Yet, 3 years later, public and private entities resist these laws.  For an example, a California resort that I am fond of had no disability access whatsoever.  This is because the law stated that they were "grandfathered" and not required to make any changes unless there was to be a major overhaul/reconstruction.  I was happy to see last year that the 125 year old Inn that I loved was bought by a new family, and they had made the entire place accessible for the disabled.

Slowly, very slowly there is a shift in the Zeitgeist towards a more inclusive world.  Slowly people are becoming more tolerant of differences and the other abled.  Where before was mockery, today for example we have TV characters such as Sheldon Cooper of the Big Bang Theory.  I would argue that his character is a stereotype, still not giving full justice to what it is like to live with autism, and that the author of the show specifically has not named Sheldon as an Aspie, but it is still a great change to see.

When I mention autism, people immediately think of Rain Man played by the consummate actor Dustin Hoffman. Again, I appreciate the exposure, but this was largely a stereotype.  The actual "rain man" that his character was modeled after was Kim Peek.  Laurence Kim Peek (November 11, 1951 – December 19, 2009) was an American savant. Known as a "megasavant", he had an exceptional memory, but he also experienced social difficulties,resulting from a developmental disability related to Agenesis of the Corpus Callosum, the same congenital defect I was born with.

Kim Peek

Kim is my hero.  When I was first diagnosed with ACC, I couldn't get enough of him, and Google the hell out of him.  I actually met him before I was diagnosed with ACC, how crazy is that?

Sadly Kim passed away in 2009 at the age of 58.  I would have loved to gotten to know him.

Here is a 45 minute video featuring Kim and his amazing savant abilities:

I was so proud to be one of him.  Certainly, very few with DDs are savants, yet his gifts were magical.  Where he had his gifts, he, like all of us also had his deficits and needed round the clock care.  Thank God, he was born into a family that treasure him and his differences. there not room in the world for Kim Peeks?  Is there not room in the world for Joseph Galbraiths?

I am so pleased that the tide has shifted to a more open and inclusive world, yet I don't believe we have gone far enough.  I believe we will have gone far enough when the likes of Kim and myself are no longer labeled as disabled, insomuch as our being included in the greater world.  We will have gone far enough when accommodations are not even called accommodations, but are seen as the just, forthright and moral way to live with those who are other abled.

The question is for each one of us...have we yet gone far enough?

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