Celebrate!

This is it, the year the Americans with Disabilities Act (ADA) turns 30.  It has been law for almost half my life ... I'm 68 now.

 

A Little History

In the 1960s, when I began to help take care of my aunt Marjorie, the world was a very different place physically and emotionally.  Marjie, as she preferred to be called, was routinely referred to as crippled, since that was the language of the day.  She'd spent rehabilitation time at facilities called "The Crippled Children's Home", one here in Pittsburgh and one in Boston.  So there was that constant drum beat in the background ... cripple, cripple, cripple.

 

No one really understood what was going on with Marjie when she first got sick in 1936.  Her tonsils had gotten infected and were removed. Later, as she became listless with inflamed joints and significant pain in every joint, the doctors said she'd had rheumatic fever that had spread during the emergency surgery.  I can't speak to the accuracy of that statement, and there's no one left to verify with. I have my doubts since we call it rheumatic arthritis (RA) today.  It was obviously a virulent version that made it impossible for her to walk without braces at 11 and confined her to a wheelchair by 14.  My grandparents were told Marjie was unlikely to live past 21.

 

I was learning how to give her insulin injections when she was 34. Like many people with disabilities, Marjie had other health issues. Diabetes, circulation and eventually heart disease.  The one key thing everyone knew about aunt Marjie was her relentlessly positive attitude.  I paid close attention between 1962 and 1986, because as a pre-teen she'd been one of my strongest role models.  After my own injury, we had lengthy conversations about the choice to be positive and how to live one's life our own way despite disability.

 

Once I had a driver's license, I became the go to niece because Marjie loved to go. Before curb cuts, before accessible parking, before the ADA became law.

 

If you're too young to understand what it might have been like, I highly recommend you watch the movie Crip Camp on Netflix, a documentary film that will introduce you to amazing people who helped change the world.

 

Disability in 2020

There are so many of us! 1 in 5 Americans have a disability:

  • 133 million Americans with chronic illness
  • 12 million US wheelchair users
  • 11 million deaf or hard of hearing in US
  • 4 million blind Americans
  • 1 million Americans with limb loss
  • Millions have cross, or multiple, disabilities

That's millions of people with millions of unique stories. And millions of experiences encountering barriers in both real and digital worlds. 360-Access exists because a few of us got tired of not being able to find accurate accessibility information. We want more than crowd-sourced reports that tell us "overall, the university has pretty good accessibility" or "ultimately the zoo is a flat place for people to enjoy the animals".  And, according to our recent surveys, people with disabilities want to know about 10 things when we're choosing where to go:

  • Accessible parking
  • Barriers outside, around or inside the facility
  • Accessible entrances and exits
  • Available assistive devices/services
  • Accessible restrooms
  • Service animal relief area
  • Power options to recharge devices
  • Available quiet spaces
  • Clear signage
  • Helpful staff

So we've designed a system to collect, or map, these accessible features of public spaces.  Of course we want the world to be 100% accessible!  But, until then we want to change conversation from compliance to what’s really there, so as individuals we can decide if it works for us.

 

The 360-Access app launches 7.26.2020!

Please join the conversation!

2 Comments

  1. Karen Alexander on June 28, 2020 at 11:53 am

    This is a great post. I loved hearing about your relationship with Marjie and how she inspired you.
    And yes, Crip Camp is an incredible film! I recommended it to a number of people.
    Congratulations on 360 Access and your important work in this are.

    • joanne on June 30, 2020 at 12:07 pm

      Thanks, Karen!

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