For a person with disabilities, accessibility is everything in a world full of obstacles

July 26th is an important day in the lives of people with disabilities. On July 26,1990, the Americans with Disabilities Act was signed into law.

 “The Americans with Disabilities Act (ADA) is a federal civil rights law that prohibits discrimination against people with disabilities in everyday activities. The ADA prohibits discrimination on the basis of disability just as other civil rights laws prohibit discrimination on the basis of race, color, sex, national origin, age, and religion. The ADA guarantees that people with disabilities have the same opportunities as everyone else to enjoy employment opportunities, purchase goods and services, and participate in state and local government programs.”

Most people don’t think much about the ADA until they take a handicap space away from a person with disabilities and someone asks them to move.

Do you know how often I see people parking in those parking spaces without any identification on the cars? A lot — and it’s frustrating. 

We have a handicap sticker for my daughter, but I don’t always use a handicap spot unless I can’t find a safe spot to take my daughter out of the car and put her into her wheelchair. It’s not just about the distance from the entrance to a building, but also about safely exiting and entering a car. 

Those lined spots between handicap spaces are not there for people to park in while quickly running into the store. If those spaces are taken, it could literally impede someone from safely entering or exiting their car. 

Last month I was sitting outside at a restaurant with my husband and my daughter. We were parked in the handicap spot. Every few minutes a car would pull up to park in the “extra” space between handicap parking and another spot. 

People were running in to pick up their online orders. If we had  to bring my daughter back to the car, we would not have had enough room to get her out of the wheelchair and into the car. 

If a wheelchair-equipped van was parked there, the person would have been stuck in the car because there would not have been room for the ramp.

Many times people don’t think beyond their own needs and in this situation that was definitely the case. I understand because even raising a daughter with disabilities, there is still so much that I don’t consider when thinking of other’s needs before our own. 

There is a definite learning curve to accessibility and it really comes down to when we experience discomfort in doing things we love to or need to do. When our routines are impacted because something or someone is in our way, accessibility hits home.

When we had three kids under 6 years old, moving our family from place to place was a challenge. We used to say that we were our own parade.

I remember thinking at that time I better understood what it was like being a person with disabilities navigating the world. 

It was hard getting through doors, unloading three kids and strollers in and out of the car, and aisles in stores were simply made for one person to walk through in a smooth line- not chasing toddlers or moving about in a manual or powered wheelchair. 

I thought I understood how a person with disabilities must feel trying to negotiate different environments with physical limitations. 

Now I know I didn’t have a clue what it was like to be disabled in a world mostly for abled-bodied people. 

When my youngest daughter was born and had her first brain surgery at 3 months old I thought that maybe it was going to be an experience she might not remember and could outgrow with time. 

By the time she was 2 years old, she had over 10 surgeries. 

Despite these difficulties, we moved from our little one-floor ranch up west on Long island to our three-story house on a farm lot on the North Fork. What we lost in accessibility, we gained in space and in quality of life in and outside our home. 

It was a very good move for our family. But we really weren’t thinking about accessibility. 

Maybe we were just a busy family in denial. We figured Jo would get stronger and more balanced through the physical and occupational therapies that she had weekly since she was just 6 months old. 

Besides, we were a family of six and there was always someone beside Jo to help her up and down the stairs, to catch her if she bumped into a wall, and to pick her up and carry her if she got tired.

When our three older kids left for college and started building lives on their own, our big house seemed too big for our little family of three. The pets now outnumbered the people. 

Accessibility was becoming more of an issue as my daughter, though stable, was experiencing more setbacks that caused her cognitive and motor decline. We considered renovating the main bathroom to make it easier for me to assist her, but it was still on the second floor. 

We slowly started looking at downsizing and for two years we went to open houses hoping to find a ranch that would make life a little easier for my daughter and her changing needs.  I also became more concerned for her safety on the top floor of our home, especially at night. 

I thought I had a better handle on understanding accessibility as a parent and caregiver with a daughter with special needs.

I quickly realized that I didn’t really have a clue — until I broke my knee and simple tasks of life became insurmountable in our beautiful three-story home. 

The accident happened on Easter Sunday. I slipped and fell; my knee slammed on the tile floor.  It was the most excruciating pain I have ever experienced in my life apart from childbirth- and with no reward in sight. 

I had to stay on the first floor of our home for about a week and then slowly crawl up the stairs taking 30 minutes twice a day, in the morning and at night. Johanna was pushing me in her wheelchair throughout the house. The role reversal was humorous on the first day. Then it just got frustrating and overwhelming.

I finally understood how hard it was for my daughter to navigate in her own home. Doorways and hallways were too small for walkers and wheelchairs and the stairs were just too scary. 

I needed assistance to get her in and out of the bath tub and realized how little supports we had in the bathroom where a fall could be life-threatening. Our home was not accessible for her or even for me.

I recovered slowly from that break without needing surgery. But the months I spent using wheelchairs, walkers and crutches with my leg immobilized taught me what life was really life with a disability. 

We sold our home just five months after my fall and moved into our current home less than a year later. 

The home we live in now is definitely more accessible. 

The bedrooms are on the first floor and thanks to assistance from friends and a Medicaid program, we have a beautiful handicap accessible bathroom and ramps into the house. 

Even our chicken coop was raised up by the builder with the nesting boxes on the outside so my daughter can collect eggs safely and check on her chickens. 

It’s still a challenge to negotiate the backyard with wheelchairs and walkers, but one of the main goals of our non-profit is to create accessible ways for all people to explore nature and the arts on Jo’s Farm and in the local community.  

Getting out in nature can be hard for people with disabilities. Nature trails with ramps are hard to find. Wheelchairs and walkers with all-terrain wheels are expensive and some are not well-made. 

Even though we live across from the Long Island Sound and only a mile from the town beach, we rarely take Jo to the beach because it’s just too hard. 

Thankfully there are mats on all of our town beaches that do help people in wheelchairs and strollers get closer to the water. 

Beach wheelchairs need to be requested by calling ahead. It’s all a step — or a roll — in the right direction. 

I am learning to advocate for accessibility for others as these lessons hit closer to home. We can learn from each other how to create a world that is more accessible for all.