Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the nineteeth question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge.
Here is this week’s question:
In what other ways are your interpersonal relationships affected by disabilities? — Examples might be that it’s harder for you to form or maintain relationships or that people treat you differently once they realize you have a disability.
This question may be easier to answer for people who acquire their disability later in life. As someone who has lived with disability her entire life, ALL of my relationships have been impacted by disability. Disability is one of my central identifiers. Even if I don’t want to admit it, my mobility impairment shapes everything I do. I’d like to take today’s question as an opportunity to discuss how my disability impacts my ability to interact with friends and family.
My use of a power wheelchair for 100% of my daily mobility makes it nearly impossible to socialize with my friends and family in their homes. I can visit my sisters Susan and Sandy during summer weather when we can sit outside, but I don’t visit them in winter because I can’t get in their houses due to steps. I rely on my best friend to visit me because her apartment has narrow interior doors and steps. I am connected to 749 people on Facebook. A rough count revealed 180 of them also use wheelchairs, leaving me with 569 ambulatory friends. Of those, 32 are living with people who use wheelchairs so that brings the total down to 537 people. Of those remaining 537, I can identify six people who own or rent a house I can enter. I meet friends out at restaurants, parks or other public spaces because I cannot access their homes. Or I am limited to see them when they can come to me.
I am not trying to make my loved ones feel guilty. I provide these facts as examples of how my disability influences my ability to freely socialize and visit with the people I care about the most. The majority of friends and family in my circle of support do not live in accessible houses, or even houses which are visitable.
What is a visitable home? A visitable home includes three basic accessibility features:
- An entrance without steps
- Wider interior doorways and hallways (32 inches for doorways, and hallways of 36 inches)
- A bathroom on the main or ground floor level with sufficient space for a wheelchair
Think about your own home. If you woke up tomorrow and were unable to walk, would you be able to function? Could you access your bathroom? Would you be able to turn on your lights and adjust your heat? Or are the controls mounted so they are only accessible to people who are standing? Would you be able to enter and exit your home without assistance? As you age and become less independent, will you be able to remain in your current residence or will you be forced to move? Would I, or another wheelchair user, be able to get in, go pee and get back out?
Visitabilty allows people, homeowners and visitors, to live and age in place without having to make significant accessibility alterations to their property. When my sister Caroline and her husband Paul built their current house, they incorporated visitability into their plans. They also included these modifications:
- A ramped entrance
- Lever door handles
- Grab bars next to the toilets (which are 19 inches high)
- Pedestal sinks in the bathroom
- A roll-in shower stall
While these features do not allow me to function independently, they do allow me to visit and stay at their house with assistance.
Some of these modifications were not in the original design, but as the house was being constructed Paul was seriously injured. After a lengthy hospital stay, he spent six weeks recuperating in their former home with the use of a wheelchair. His experiences helped shape the changes which they implemented. All of a sudden my suggestion for pedestal sinks in the bathroom, which were not included in the original plans, seemed like a smart idea. Caroline has told me if they were to build again, she would make even more changes to improve accessibility and functionality.
There is a growing international movement to improve communities by making all new homes visitable. Several communities and municipalities in the United States and Canada have enacted policies and regulations which require all newly constructed homes to meet the three basic visitability standards. You can learn more about Eleanor Smith, who began the movement in the United States, by clicking on this link for the Concrete Change website. You will find resources and construction guidelines, as well as information on the history of the movement. You can also learn more about what is happening in Canada at the VisitAble Housing Canada website.
Many times, people talk about access as it applies to others. But a temporary or permanent illness or injury resulting in disability can make an issue become personal, or “hit home.” And when a person’s home is a barrier to inclusion in their community or full participation in the activities they enjoy, they can withdraw and face isolation.
I am grateful to my sister and her husband for thinking of me as they designed their house. I wish Paul did not have to endure an injury to gain first-hand disability experience, but I appreciate the insight he developed as a result of viewing the world from a seated position for a short time. I hope as visitability continues to grow, my ability to engage with friends and family in their homes also increases. I bring my own chair so I’m an easy guest!