Julia was born in 1997 with a condition called Lissencephaly, which is a malformation of the brain that causes profound physical and mental developmental delay. Our first barrier was language: to me the word “delay” means that the person will eventually catch up with peers, but that was not the case. Julia never sat up on her own, walked, talked, or did most of the things a kid learns to do. She began getting physical, speech, and occupational therapy after her diagnosis about age 3 months, and she continued getting these therapies through school.
Also around age 3 it became difficult to get into our church, which had a stair-climbing chair up about 10 steps into the sanctuary and a separate education building with steps but no elevator. Since Julia could not sit up or support her own weight, she could not use the stair lift. It became increasingly dangerous to carry her and her heavy supportive chair up the stairs and we began searching for an accessible church to join. It was heartbreaking having to leave a church we loved because we could not physically access it. However we eventually found a welcoming church with no barriers. Partly due to our leaving, the prior church started a fundraising campaign and a few years later did a big renovation with an elevator and walkway between the two buildings, which could access both levels of the education building and the sanctuary. This shows that it sometimes takes an experience of knowing someone affected by inaccessibility to prompt change.
Around this same time Julia got her first real wheelchair and it became necessary to get an accessible van. By this time she had a feeding tube, suction machine and oxygen and there was a lot of equipment to carry around. She was too heavy to safely lift in and out of a car seat. I chose a rear-entry ramp van because where we lived in NJ there were seldom handicapped spots available with the extra room out the side for loading. With a rear-entry minivan we could park in any spot and get Julia in and out of the back, as well as load and unload her in our one-car garage. Additionally, this left the possibility of a seat in the second row next to Julia for me to sit on trips to comfort and suction her, or for another infant in a car seat if we had other children. In a side-entry van there would have been no way for a passenger to reach her while the van was moving—and a newborn would have been in the WAY back third row of the van which did not seem safe. The only financial assistance for this van was a $1000 rebate from Chrysler. In 2000, the total cost of the van and conversion was about $55,000, plus we had to buy the van and be without it for 3 months while it was converted (while still making monthly payments plus renting another van). The van was fabulous and increased Julia’s ability to participate in activities and visit grandparents 600 miles away.
The house we lived in when Julia was born happened to be a ranch style house on one level with a basement. We were fortunate to have the financial resources to be able to modify the house to fit Julia’s needs as she grew. Specifically, we combined two small back-to-back bathrooms into one large bathroom with room for a wheelchair and a roll-in or walk-in shower. Since this was now the only bathroom in the house we chose to install a foldaway bench for Julia to use so that we did not have to find storage for a shower chair. The shower bench also worked great for giving Julia’s therapy dog Berry a bath. Universal design benefits everyone! We had a landscaper ramp the front of the house using pavers which was functional and beautiful. Soon afterwards our refrigerator died and when the new one was delivered easily up the ramp, the delivery man said “everyone’s house should be like this!” Yes, I agree.
Julia had many problems related to her underlying condition, one of which was that she was prone to pneumonia any time she caught a cold. She ended up passing away at the age of 13 from pneumonia and sepsis. Due to her example, I decided to go back to school to pursue a career in occupational therapy and am pleased to be involved in the Universal Design Project for my doctoral experience.
Housing and Health
We were fortunate to be able to make adaptations to the house to keep Julia’s health from being affected much by lack of accessibility. However, I know several parents of children with disabilities who have had back injuries lifting their children or the wheelchair into a car or up steps. This is one reason we got a ramp van when Julia was only 3 years old–I actually slipped on a patch of ice lifting her from the car seat into the wheelchair and we both fell hard. I vowed not to go through another winter putting her life in danger in that way. Lack of accessibility of our friends’ homes kept us isolated much of the time. We were unable to invite friends to our own home if there was any chance of someone having a cold, which restricted our social lives drastically. When we were invited to other people’s homes we had to choose which one went and which one stayed home with Julia. We also vacationed separately so that one parent was always with Julia because her care was too complicated for other family members to take over.