Living Well with Parkinsons Disease

Dancing in the Rain: Lessons Learned on my Personal Journey with PD (more at Copyright 2013-20 Sheryl Jedlinski

Throw open the doors!

By Sheryl Jedlinski

When I started using a walker last year, my therapist said it would “open doors” for me. I assumed she meant doors to public restrooms, restaurants, movie theatres, and retail stores, but she did not. In fact, many such places became less accessible to me when I traded in my aluminum walking sticks for a sleek Euro style rolling walker. Overnight it seemed, everywhere I turned, manmade barriers from high curbs to heavy doors to stairways impeded my progress, bringing me to a grinding halt within feet of my destination. For the first time in my 21-year journey with Parkinson’s I feel disabled, unable to function independently outside my home.

An invitation to a reception for a friend’s gallery opening requires I call the venue – a repurposed historic courthouse – to assess its accessibility and avoid “day of” surprises. It was good that I did. “We are not handicapped accessible nor even handicapped friendly,” the receptionist told me.

How could this be almost 30 years after passage of The Americans with Disabilities Act (ADA) promised equal rights and opportunities for people with disabilities to “fully participate in all aspects of community life, to live independently, and to achieve economic self-sufficiency?” While this landmark civil rights legislation has brought about sweeping changes, like the installation of curb cuts and ramps that have benefitted families pushing strollers as well as people using wheelchairs and scooters, much remains to be done to fulfill the promise of the law, especially in the area of physical accessibility.

Ongoing barrier removal has been slowed by lawmakers’ concerns that they not burden business. This excludes employers from any obligations to remove barriers that are not “readily achievable without much difficulty or expense.” Projects can drag out over several years, leaving “improvements” unusable in the interim. While the installation of a ramp allows me to enter buildings I otherwise couldn’t, there is no guarantee that the buildings are ADA compliant on the inside. I have come so close to a public restroom that I can smell the disinfectant in the air but can’t reach the facilities because boxes stacked in the hallway make it impossible to negotiate with my walker. Even if I make it to the door, more often than not it is too heavy for me to push open, requiring I wait and solicit the help of whoever happens by. Once inside, I may be confronted by an undersized stall that does not allow me to maneuver my walker. Partially accessible is as good as not at all accessible.

The final stumbling block keeping the ADA from achieving its full potential is its lack of strong “teeth.” Compliance is voluntary and reporting requirements non-existent except for new construction and alterations where accessibility is often enforced by local building codes. Otherwise, enforcement depends on people with disabilities filing a lawsuit, a relatively rare occurrence. If the plaintiff prevails, the court will likely order the defendant to correct the violation(s) and reimburse attorney fees. Little if any damages are awarded.

Frustration boiled over into anger as my world started closing in around me. Realizing I could no longer pull open the entry door to my favorite women’s clothing store, I pounded on the window and yelled as loud as I could to get someone’s attention to let me in. Finally, a compassionate delivery truck driver saw my plight, jumped out of his vehicle, ran over, and opened the door for me. To this day, only one of 70 stores in this outdoor mall has a blue mobility button I can press to automatically open a door and enter on my own with my walker. Sadly, the ADA does not require this. Accessible doors need only be wide enough to accommodate a wheelchair; they need not open automatically to let the wheelchair through. How is this accessible?

How can we as individuals make our world friendlier to all? Start by raising awareness in our own communities of the need to be a good neighbor and hold open a door for someone who needs help. Let store managers know how difficult it is to get in and out of their buildings and suggest they train employees, especially greeters, to watch for and assist those who need help. You can even suggest adding automatic door openers.

I am not asking for anything that we are not already entitled to by law. I am simply asking that the law be enforced so the promise of the ADA can finally be realized, enabling all Americans to have an equal chance at living a “normal” life and being valued community members. It is simply the right thing to do and helps us all prosper.

“Let the shameful wall of exclusion finally come tumbling down,” President George H. W. Bush proclaimed when he signed the ADA into law almost three decades ago. How much longer must we wait for this to happen?

2 comments on “Throw open the doors!

  1. Larry Williams
    July 16, 2019

    Sheryl, as always, this is awesome. I hope you sent it to the Tribune (and perhaps The Herald) where it will get more needed attention. Perhaps even to a television station where they might pick it up as a feature story…..

    Do not want this to fall on deaf ears…

    Would you like a ground cover geranium (cranesbill) for that beautiful area outside you window…I have extras and I think it would really look pretty there…they are perrenials…..give it some thought.

  2. parkinsonscare
    July 18, 2019

    Thanks, Sheryl. This is so important, but people won’t realize it until they, too, have to use assistive devices or are pushing a stroller. I had this conversation yesterday with a salesperson in a parking lot who was pulling a cart filled with products. Let’s raise the awareness! Thanks for posting this. We have boycotted stores that aren’t handicap friendly.

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This entry was posted on July 16, 2019 by in Advocacy, Before Surgery, Coping Strategies.

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