about the author:
Jacob Gapko is 45 years old with Duchenne. He uses a power wheelchair and non-invasive ventilation 24/7. He has a BS, an MLIS, and is a specialist. Jacob has an incredible passion for helping our DMD community. He can be reached at Jacob.Gapko@FamilyFriendsAndDuchenne.org
The Wheelchair, the Powerchair and Social Life
A guide to social activity implications of the wheelchair and powerchair
Wheelchairs. Powerchairs.
For the Duchenne family with non-ambulatory loved ones, wheelchairs and powerchairs become as commonplace as clothes. We always have them around, whether in the home, in the car, or out and about the town. We know inside and out which social events we can be included in and which ones we can’t.
For extended family and friends – and Duchenne families new to the wheelchair/powerchair themselves – there is quite the learning curve for understanding how using a wheelchair/powerchair significantly reduces, complicates, or makes it impossible to engage in social activities outside the home.
As children with Duchenne become older, boys and girls with Duchenne will need to advocate for themselves to participate in social activities. They might not even realize all of these considerations unless an adult talks them through the situations; they might only realize that they don’t visit grandma’s, their favorite restaurant, or (fill in the blank) anymore.
Below are some examples of social situations and some of the questions that those in our Duchenne community always have to consider once a wheelchair/powerchair becomes a necessary part of life. Some of the questions may seem repetitive but that is because they have almost become a mantra when thinking about social activities outside of the home.
Going to a Restaurant
- How do we get there? What does transport look like? Does the person in the wheelchair need to transfer into a car and have their wheelchair stored? If you have a powerchair involved, you need an accessible vehicle with a ramp or lift for transport.
- Where is accessible parking located? If using the accessible vehicle with a ramp or a lift, how is that going to deploy where we park? Which side of the vehicle does the ramp or lift deploy? This might entail dropping that lift directly onto the road (for example, the lift on your vehicle took place on the right-hand side but for some reason you had to park on the left-hand side of the street).
- Can someone with a wheelchair get to the door at the main entrance? Is there a door opener that the person in a wheelchair can access or do they have to depend on others? Are staff likely to notice someone in a wheelchair outside the door and come to help? If the main entrance is not an option, what is the alternative (side door or service entrance)?
- Can a person in a wheelchair navigate the interior of the restaurant?
- Can a person in a wheelchair park at a table or booth? If not, what needs to be brought with such as blocks to raise the table or a tray for the wheelchair?
- Can a person in a wheelchair park at the bar?
- Can a person in a wheelchair get to and enter the bathroom?
- Is it possible to transfer from wheelchair to toilet?
- Is the staff properly trained to respect persons in a wheelchair?
- Can the restaurant accommodate dietary restrictions?
Visiting a Friend’s House
- How do we get there? What does transport look like? Does the person in the wheelchair need to transfer into a car and have their wheelchair stored? If you have a powerchair involved, you need an accessible vehicle with a ramp or lift for transport.
- Where to park?
- Is there a level entrance? Can a wheelchair get in the front door? Are there steps? It is possible to pull manual wheelchair up the steps if you are careful. Steps are impossible with most powerchairs. If not, is there an alternative entrance that is wheelchair accessible? Do we need to bring ramps or create makeshift ramps with lumber? If there are too many steps ramps will not work.
- Can a person in a wheelchair park at a table? If not, what needs to be brought with such as blocks to raise the table or a tray for the wheelchair?
- Can a person in a wheelchair get to and enter the bathroom? Is it possible to transfer from wheelchair to toilet? What if I need help? Is the person in the wheelchair willing to ask friends for help in the bathroom? Are friends comfortable helping in the bathroom? Most are but not all are. Will it be safe for your child and the person helping?
- Where is the gathering being held in the house? You cannot assume everything is fine just because you get in.
Going Out to a Concert, Movie, etc.
- Where are we going?
- How do we get there? What does transport look like? Does the person in the wheelchair need to transfer into a car and have their wheelchair stored? If you have a powerchair involved, you need an accessible vehicle with a ramp or lift for transport. Can I transfer into my friend’s vehicle? Can my friends drive our wheelchair accessible vehicle?
- Is the destination accessible? Are there alternative ways to get in?
- Can a person in a wheelchair get to and enter the bathroom? Is it possible to transfer from wheelchair to toilet? What if I need help? Is the person in the wheelchair willing to ask friends for help in the bathroom? Are friends comfortable helping in the bathroom? Most are but not all are.
Staying at a Hotel out of Town
- Is the hotel accessible?
- Where to park?
- Do they have accessible rooms? Can they be reserved? If we arrive late, will we be guaranteed the room? What do they mean by accessible and how does that fit with what you need? Do they only mean grab bars?
- How large is the room and bathroom? How wide are the doors? How much space is there between beds? Is there clear space under the beds for a patient lift or is the bed on a solid pedestal?
- Does the bathroom have space to use a patient lift? Is there a roll in shower? Will your shower chairs fit? How is the sink configured?
- Is there space for all of your equipment? Is there space to set up a hospital bed and room to make a transfer using a patient lift? Will you transport all of the equipment you need with you, or can you make arrangements for a rental delivery to your hotel?
- What floors are accessible rooms on? If not on the main floor, what happens if you had to evacuate?
Duchenne families can embrace the challenges of going out, decide to make their home the cool place to hang out, or some combination of both. Frankly speaking, it usually is ideal for extended family and friends to gather at the Duchenne family’s home. Their home is guaranteed wheelchair/powerchair accessible and there is guaranteed opportunity for your loved one with Duchenne to participate in the activities.
There’s no right or wrong way to solve the problem of social isolation for individuals with Duchenne and their families. But the best way to start solving it is by having conversations about social life between Duchenne families, their extended families and friends.