At Ease: A guide to improving accessibility in the workplace and on route for people with invisible disabilities

People living with Parkinson’s likely have invisible disabilities and face many barriers as they go about their daily lives. Invisible disabilities include sight, hearing, learning, and speech impediments; diabetes; anxiety; chronic pain; sleep disorders and chronic fatigue.

Ontario was the first province in Canada and one of the first jurisdictions in the world, to enact specific legislation establishing goals and time frames for accessibility. These considerations were guided by the Accessibility for Ontarians with Disabilities Act (AODA).

With partial funding from a grant from the EnAbling Change Program with support from the Government of Ontario, Parkinson Canada recently produced a booklet entitled “At Ease: A guide to improving accessibility in the workplace and on route for people with invisible disabilities.” The resource helps individuals understand what an invisible disability is, and what private and nonprofit organizations need to provide to meet the AODA Customer Service Standard. It also sheds some light on how best to remove barriers for people with invisible disabilities, especially in the workplace and on transit systems.

“People with Parkinson’s and other neurological conditions can remain in the workforce for many productive years, and often, they continue to utilize public transit to get to and from work. It’s important that they are provided with safe transport on transit and given every opportunity to advocate for their independence and self-sufficiency at their places of employment, especially when their symptoms and disabilities are not well understood. That includes having appropriate accommodations made while in the workplace,” says Neli Gontier, Training and Education Specialist at Parkinson Canada, and project lead.

This free booklet introduces readers to AODA. It also provides answers to frequently asked questions as well as a glossary of definitions, and contact information for other organizations that help remove barriers for individuals living with neurological conditions.

One person with Parkinson’s who rides on public transit frequently is Alice-Betty (AB) Rustin. AB has learned to live well with Parkinson’s and is not slowing down, as she continues to volunteer with Parkinson Canada on the Ontario Advocacy Committee while helping others use various transit systems, including the province’s largest, the Toronto Transit Commission (TTC). AB knows that beyond the visible tremors, some of the lesser-known non-motor symptoms can be the most challenging to manage day-to-day.

Some challenges she faces while riding the TTC subway is the lack of elevators at some stations. Unable to go up and down stairs any longer, this poses a huge problem and forced AB to map out and avoid those stations, often lengthening her trip.

The subway has blue priority seats assigned near the car doors, to allow people with special needs to be seated quickly and easily. But not all riders are aware of their purpose or understand the needs of people with invisible disabilities.

“I cannot stand for long periods and am not shy to outright ask someone to give me their seat … happens about 30% of the time,” AB shares. “Maybe the transit commissions can work on more advertising and signage explaining what the blue seats are for.”

Another hardship is the lack of public washrooms, as bladder control is a common problem for people with Parkinson’s. AB will travel out of her way to a farther station to use the restroom and then double back on her trip.

Another system she uses to get around is Wheel-Trans, also run by the TTC and offering pick up and drop off from door to door, prearranged with flexible options for booking and changing plans as needed. Special rates apply for people with disabilities and the handy Presto card can be automatically loaded and used for payments on any TTC route, including Wheel-Trans.

“It’s a safe and reliable service; helps avoid the mad rush that occurs at peak times, which can be frightening for me as I am not agile on my feet anymore,” says AB. “One time there were hundreds of people stranded due to a fire on the subway and I was a few stops from my home. People were very helpful and I got home OK, but was really shaken by the whole experience.”

Overcrowding has become a serious issue for many transit agencies in urban areas such as the Toronto and Vancouver. This may result in greater risks for people with visible and invisible disabilities.

AB suffered a stroke recently and still manages to help a friend who has MS and is in a wheelchair, get to her appointments.

“The key to living well with disabilities is to be informed—know the services available to help you and also know the shortcomings, to better prepare yourself. It’s also important to know what you are entitled to under the accessibility legislation,” notes Neli Gontier.

To get your complimentary copy of “At Ease: A guide to improving accessibility in the workplace and on route for people with invisible disabilities” write to education@parkinson.ca or call 1-800-565-3000 ext. 3320.

For more information on the upcoming Parkinson Canada webinar on improved accessibility in the workplace and on transit, download a PDF Flyer from Parkinson Canada.

Pour de plus amples informations en français, cliquez ici.

Upcoming Webinars

December 11, 2018
Incontinence and Voiding Dysfunction in Parkinson’s
– with Dr. Sidney B. Radomski, MD FRCSC.


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