The Peter Pan novel which J.M. Barrie wrote in 1911, based on his 1904 play, includes a curious concept about the hideout trees Peter uses for his lost boys’ housing. The boys must be made to fit to the trees in order to abide in the hideout, and not the trees for the boys. Barrie explains this by saying it is usual for tailors to make clothes to fit the children, and not the children to fit the clothes. But in Peter’s Neverland, the environment doesn’t adapt to you, you adapt to the environment, so that way all lost children will fit in Peter’s version of fantasy.
How curious for me to come back to this particular feature of Peter’s nefarious Neverland when I had just put down the late Judy Heumann’s memoir Becoming Heumann: An Unrepentant Memoir of a Disability Rights Activist with Kristin Joiner. Judy emphasizes being part of designing our world around our humanity for inclusive community and belonging, like how clothes are made for the person’s body, instead of relying on society’s framework, which forces all people to adapt to its structure. This leaves no room for adaptation and accessibility for the human beings it purports to make space for.
It seems reality too is a nefarious Neverland of sorts, as Judy Heumann and Brad Lomax led the 504 sit-ins in 1973 which made way for the 1990 Americans with Disabilities Act. This law federally legalized public spaces to accommodate the 13.2 million persons at that time living with mobility and self-care disabilities. Judy believed the system works for the people and not the people for the system. She taught that we are the ones outlining the boundaries–the boundaries are not defining us.
This leaves for a better framework when one is becoming disabled due to naturally aging or whether their initial disability progresses. Instead of viewing assistive devices like wheelchairs or walkers or canes or braces as cumbersome and sad, view them as accommodating for furthering activity and participation in your community. It’s a wonderful day when a human body that needs assistance and support surrounding their balance, pain, nerve damage, or muscle wasting gets fitted for an accommodating device. Now they can maintain independence and exist within their home and community!
For better mobility in self care, a shower bench or tub bench is wonderful for assistance in bodily hygiene. Sock aids and reachers and shoe horns for shoes are excellent to conserve energy when getting dressed for the day. Adaptive jar and bottle openers, suction cup scrubbers, adaptive cutting boards, and rocker knives keep disabled people in their kitchens doing the things they love.
Gunnar Shipley, an occupational therapist in the Twin Ports, promotes three steps for framing your life with your disability in mind to remain more autonomous among your loved ones. These steps are pacing, planning, and adapting. Pacing means it’s okay to take breaks and rest if a physical activity like house cleaning, hygiene, or recreation zap energy and strength wherein before they didn’t. Planning is something a person will do before they start their day and before they feel tired. That way they have a script either on paper or in their mind of what needs to get done or what can be finished another day. Adapting is utilizing your accessible equipment to compensate for the energy and strength your body no longer can maintain.
In this way, living disabled is seen as just as valuable and worthy as living able-bodied. It puts us on an equal status to our peers so we are given inclusion instead of exclusion. Disabled bodies are not incorrect or wrong and mustn’t be seen as a problem to solve when it comes to physical and digital spaces. The physical and digital space must be corrected and righted for the audience occupying the physical and digital space. This is what we mean by love, equity, and justice work. Judy promoted it and lived it. She and Brad Lomax spearheaded the work to undermine a nefarious reality that exists in many private spaces by making it a public health crisis. There’s a reason Peter Pan is a trope for boys who never want to grow up because they always want others to fit into their perception of reality instead of the reality affecting all humans. Happy Disability Pride month everyone!
From: Author Rebekah Palmer
