I was born May 6, 1978, and the story goes, that doctors said things akin to “Oh my God,” and other things a new mother absolutely does not want to hear. My mother would always say that she looked at me and did not understand why they were so upset, that I looked perfectly fine to her, but the truth is I was not fine.

At Elfeth's Alley as a child

The condition congenital talipes equinovarus, or clubbed feet, is a completely common congenital deformity. By the time I was six years old I had at least three major surgeries to reshape my feet and lower legs. Much of the time I lived at Shriner’s Hospital for Children, an organization that performs necessary operations on children whose families’ cannot otherwise afford it. While it amounted to an institution for disabled children to be transformed and recover, the nurses and doctors always made it a wonderful bright place.

There are memories I have of being among so many people so similar to me, being able to very comfortably wheel myself through the areas we were confined to, and not feeling constantly judged. Later I realized there were two reasons we were all in the hospital together, one being that we truly needed extensive care in many situations but another was that the world was not able to handle us, in many ways.

At five, I could not attend my local elementary school, James Russell Lowell in the Olney neighborhood of Philadelphia, for Kindergarten. That was because I could not get in the building without being carried or by dragging myself on my arms up the steps. By the time I could walk up the steps, it was still difficult, because I had braces (a la young Forrest Gump) running the length of both my legs. This lead me to spend much of my time inside reading during recess, lunch and gym.

Al Joe Aja

While I am able to walk now, and have been for years, it is not beyond my body to cease those movements. The reality I live with is: I may end up in a wheelchair again as I age, and that there will no walking again after that. This does not bother me as much as it could, because I have done things in my life, like run, jump, roller skate, and ride a bike. All things doctors said I would never be able to do. While I am happy my body has been made into what it is, it has taken time for me. I have struggled every day with the fact that I am not me as I was born to be, but that I was made and formed into this, because I did not well enough fit the world as it was.

This was before the Americans with Disabilities Act, ADA, was signed into effect in 1990. Everyone my age remembers the time before there were dips in every curb, before ramps at the entrances to every building, but not everyone remembers that directly affecting them. I vividly remember the curb on my street corner cut away. Although it was after I was out of a wheelchair, it was very moving. This aspect of my life has caused me to be hyper aware of accessibility.

There was a time I brought up a complaint to the placement of a bike rack, because of its proximity to the ramp to a Philadelphia restaurant and music venue, where the upstairs music venue is inaccessible to people with disabilities. The representative from the community organization who approved the design told me I should have contacted him before the plans were finalized, and that despite it not being built for at least 6 months, the plans would not be changed. My response was that it was not I who was tasked with, and paid for, the design, but him. They organization wrote me off as an angry woman, frustrated with my own limitations.

There was a time I brought up to a religious organization, in mid redesign of their facilities, that I was surprised this design did not include accessibility for the disabled. This one organization regularly held events in three separate buildings throughout Philadelphia on the upper stories of buildings that only had steps. I was told, in a very sweet way by a very large man, that people could be carried up the steps. It was difficult for those people to see what I saw, and I tried to explain how demeaning that was to me, someone who had been carried up and down steps. I was dismissed as an angry woman, frustrated with my own limitations.

Truly elegant design is accessible to all. A truly inclusive society does not ask a person who requires mobility assistance to access any building by being carried, or even from a freight elevator in an alleyway, as is still done in some major cities, and even here in Philadelphia.

There are parts of the world where my infant body would have been tossed from a cliff, and so I am so happy to be where I am. It was once that the disabled were simply torn apart and reshaped to better accommodate the world, but I get to see the world change before my very eyes, see the world being reshaped to be more accessible. And that accessibility does not only benefit the disabled, that accessibility benefits everyone.

Aja Front Steps

Advertisements