Disability Awareness is not about simulations, it is about taking a bus

Perceptions and attitudes about people with disabilities are one of the most difficult challenges that people with disabilities face. I was as young as 5 years old when I recognized and observed that people treated me differently. I noticed it in their facial expressions, general body language and even in the words they chose. Very early, I learned to encourage and respond to questions about “What happened?” and “Why do you walk like that?”

I came to quickly understand how I acted and reacted set the tone for future interactions that would happen for other people with disabilities. I have chosen to address most questions directly. For a young child who asks “Why do you use those”, (referring to the walking poles), my response is simple. “They help me to walk.”  For adults the answer is, “I was born this way.” This statement often leads to more in-depth conversation. My end goal in having this kind of conversation with anyone is to increase exposure, sensitivity, and awareness. If I have been remotely successful in achieving the goal, that conversation starts to close a gap in knowledge that exists.  In my experience, perceptions and biases about disabilities and people with disabilities are hard to alter.

I am wary about disability simulation exercises that are often used to try to educate people without disabilities about the disability experience.  Examples of these exercises might include tying one arm behind a person’s back for a day, using a mobility aid for a day, or wearing a blindfold for a day.  These exercises are used in a range of fields including health care. The goal of disability simulation exercises in my mind has a respectable aim. The intent is to imbue recognition of bias, stigma, and support the development of sensitivity and empathy.

Research has shown that disability simulation exercises can result in a range of responses from participants without disabilities including stirring up feelings of pity, feeling sorry for a person with a disability, and wondering how they function independently in their home and community.1   Alternatively, the simulation exercises can bring about genuine recognition about systems barriers that exist for people with disabilities such as a lack of accessibility.2

The biggest concern and problem that I have with disability simulation exercises  is that they are time-limited and temporary.  I think of these simulation exercises like breaking a bone.  When you break a bone, the bone gets reset and you are put in a cast or splint to immobilize the limb affected. Six to eight weeks later the cast or splint is removed, the bone is fully healed, and life resumes.  My fear and concern about disability simulation is when the exercise is over, do elements of empathy and awareness that we want to teach and integrate fade over time?

Before I started writing this piece, I thought about experiences that increase disability awareness in terms of helping a person without a disability start to develop a sense of barriers that  people with disabilities face. One example I recalled was when my Grandmother came to visit me in the middle of winter over ten years ago. She was in her eighties at the time. She and I had to take the public bus system to get groceries, to go shopping, and navigate the city I live in. My Grandmother had not taken the bus to get anywhere in over 40 years.

It was very cold and snowing slightly on the day of our errands. She was not prepared for the 30- to 40-minute wait for the bus. She had to wrap her scarf around her head for warmth. She grew colder as the minutes passed. She commented in an annoyed tone that the length of time we had to wait for the bus was unacceptable. Once the bus arrived and we were in route, she commented on the frequency of stops that averaged every ¼ of a mile.

When we had purchased our grocery items and were back on the bus, I sat in the only open seat available. My Grandmother had to stand. She had multiple grocery bags in her hands was a bit wobbly from trying to maintain her balance in the moving bus. She did not like how crowded and noisy the bus became. She did not like having to stand while the bus made multiple stops.

At the conclusion of the trip, she said that she was glad that she never had to go through the experience again. I did not comment at first. I was carefully considering my response. I decided to ask a question:

“Grandma, can you imagine only being able to catch a bus one time per day to get around town if at all? You had trouble standing up while the bus was in motion with grocery bags. Do you have a better sense of what it is like for me?” Our walk home was very quiet. I knew my Grandmother was contemplating the scenarios I presented.

From our bus experiences, my Grandmother developed a new sense of awareness. She had gained some sense of the challenges that people with disabilities can face with transportation. She was exposed to some of the gaps in services that exist. She was exposed to a lack of access that she was not accustomed to. In place of disability simulations, I would suggest an extended learning experience between a person without a disability and a person with a disability.

 My Grandmother was immersed in my daily tasks and experiences for 48 hours. She had to access the same resources I did. She had to experience the extended wait times and challenges when the ride we were counting on did not appear.

First-hand experience is an invaluable tool to increase awareness  and empathy. The increase in awareness and empathy that I have described here was not about Spastic Cerebral Palsy as a condition. The “a-ha moment” and understanding came when my Grandmother and I took the bus.

1. McKenney, A. (2018). Attitude Changes Following Participation in Disability Simulation Activities. Therapeutic Recreation Journal, 52(3), 215+.

2. McKenney, A. (2018). Attitude Changes Following Participation in Disability Simulation Activities. Therapeutic Recreation Journal, 52(3), 215+.

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