Accessibility: A Strategy and an Art

Nadiya's new wheelchair is much more
manageable than those we’ve had before.

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It is the nature of living things to get from point A to point B. Even a flower will slowly climb up its stem in search of the sun’s rays. Along the way there are the typical obstacles that must be either avoided or overcome like the traffic accident that makes you late for work or the congested lobby that fills an elevator with no room left for you to squeeze in. We are always on the move searching to have our needs met and to meet the needs of others. This is the busy world we live in and most have become a productive part of it.

Now imagine if every journey was speckled with barriers forcing you to navigate around it or surrender. How functional would your life be? Would you accomplish much? This is what it can be like for a disabled person when they venture out into the world. There are challenges at every corner, some hidden and some in full view. Even the most confident and optimistic person can find themselves frustrated and dispirited.

I believe a significant amount of careless people must take ownership in causing many of these difficulties. There are a lot of selfish, oblivious people stumbling from point A to point B. Unfortunately they cross my path more often than I like. Nadiya is not able to pilot herself on any of these journeys so she relies on a competent adult to do this for her. I am often that competent adult. It gives me the opportunity to see things through her eyes. I can’t help but imagine her sadness and frustration as she passes through a world not designed to include her. What must she feel? I feel frustrated and isolated. I feel angry. Allow me to take you on an expedition in Nadiya’s wheelchair. When the ride is over I want you to ask yourself what do youfeel?

Along for the Ride

Nadiya's bus stop

It is early morning and time for school. We live on a dead end street without ample room to turn around on. The school bus is not permitted to drive to the end of our street. Once a driver backed down to pick Nadiya up and they got in trouble with their superiors. Most disabled children have door to door transportation, that is, unless they live on a dead end street. We have to walk to where the street forks. That is where Nadiya’s bus stop is. This is fine when the weather is nice but in

the pouring rain or freezing cold this isn’t fun.



To make matters worse there seems to be an extraordinary amount of people with driver’s licenses who do not remember the school bus laws they were tested on at the Department of Motor Vehicles. They fly past the bus while Nadiya is on the lift. I have chased some, confronted others, and the bus personnel have taken down license plate numbers to report them. How is it that there are people who would do this especially while a child is on a wheelchair lift?

A wet branch obstructs our path to the bus stop

The bus stop obstacles do not end with the drivers failing to stop for the flashing light. I frequently have difficulties just getting to the bus stop. There are the icy or snowy days where at least one homeowner does not shovel their part of the walk. Luckily we have a neighbor with a snow blower who will clear the snow but there isn’t much he can do about ice. Regularly there are tree branches blocking the sidewalk so that they hit me in the face. This is particularly fun when the branches are wet. On several occasions

A different day, different person no passage

No passage

people have blocked the sidewalk with their vehicles. This makes it impossible to pass sometimes without riding in the grass, off a curb, or into the street. Nadiya’s old wheelchair which was a Quickie Zippie would dangerously tip forward or sideways whenever we hit an uneven sidewalk crack so these off road adventures were particularly treacherous. It is also very frustrating that it is always the same people. I make it a practice to confront people when they do this so that they are aware of what they have done, especially the repeat offenders. This is most affective if Nadiya is there sitting inconvenienced in her chair. The visual usually hits home better than the words I am saying to them.

Off to the Community

This truck blocks the access to the sidewalk

for wheelchairs just to run in for coffee.

Assuming you get out of the neighborhood there is an abundance of other obstacles to tackle in the community. Handicap parking is probably my most frustrating to date. I have seen a carload of business men in suits with no apparent physical impairments get out of a car with a handicap placard. I can only assume it belongs to a family member, such as an aging mother, and they want premium parking for lunch. I have seen overweight people take a handicap spot when in many cases walking is healthier for them. I have always felt that handicap parking should be reserved for people with equipment such as a wheelchair, walker, cane, crutches, oxygen, cast or boot. In addition those with severe lung diseases and disorders that limit their ability to walk distances should have access. Anyone else can use the walk. There is no worse parking situation than having to load Nadiya in her chair from behind my van in the middle of traffic. Not only do I have to carry her there but cars speed recklessly by me endangering both of us. To make matters worse the handicap spots are time and again taken by those who don’t need them or those who don’t even have a placard. I have even seen people park across handicap crosswalks blocking the graduated curb access for wheelchairs and I have seen motorcycles park in the handicap accessibility isle. If law enforcement hired some meter maid or security type positions to ticket these offenders who park illegally they would make a great deal of money for the state.

Nadiya's soaked chair after traveling

back to the car on a clinic day

If the weather is bad the parking problem is usually worse. You will likely have even more people parking illegally because they don’t want to get wet. Meanwhile Nadiya is soaked as I am trying to get her in her chair because there is no hood or awning on the wheelchair. Holding an umbrella over her while pushing the chair is often a bad circus act resulting in both of us getting soaked. Besides the rain beware if it snowed recently; you will have even greater trouble. People who work in snow removal seem to think the handicap spots are a great place to dump the mountains of snow. If they have the sense not to cover the actually parking spot they usually cover the crosswalk area that accesses the wheelchair bound person with anything like the street, shops, and the rest of the parking lot. This forces wheelchairs into traffic which is never safe. Sometimes if the lot has not been graded properly your handicap parking may have an aquatic feature where it is actually under water. That’s fun. Don’t wear good shoes because you are likely to destroy them loading and unloading the disabled person and their chair.

Managing equipment in public can be difficult. All of it has to be unloaded and depending on your vehicle and the size and function of the Durable Medical Equipment (DME) assembly of some sort is usually required. If you are in a questionable location such as a mall during the holidays when assaults tend to occur, you are vulnerable. I like to think that if someone was to accost me that the wheelchair and or its unassembled parts would serve as a weapon of self defense but who knows how that would end. Nadiya had a wheelchair for awhile that used to randomly lose its wheel. This would occur in the parking lot as I unloaded it. Most of the times it was raining as I had to chase the rolling wheel as it escaped down the parking lot.

The next thing you will have to navigate is the accessibility of the place you are entering. A private residence will be challenging a public place is supposed to be accessible but sometimes their idea of accessible and yours does not mesh. You may have access to an elevator but it may not go up to all 16 floors. You may have to switch elevators because you can’t take a fight of steps that connect two different parts of a building. The automatic handicap doors may or may not work. In some places I find tossing a coin to see if it will work is pretty accurate. The isles in stores are usually very tight and some impassable. If you must use the restroom you will find that everyone uses the handicapped stall. This is ok, really. What isn’t ok is when a family of 4 is using it while a disabled person is waiting for the restroom. If you are in line and a disabled person is in line they get the handicapped stall when it is next available. It will take them 3 times as long to use the restroom with 10 times the difficulty. Give them a break. They are entitled to it and you can use any stall even with your kids. If you must put your entire family in the handicap stall wait until the disabled person uses it first.

Changing tables are a challenge that most don’t realize until they are experiencing it. Children who are disabled are often in diapers even if they are potty trained. Nadiya is pretty much potty trained but if she is not taken to a toilet when she needs it and it is not accessible she will have an accident. This is why she wears diapers. In public it is impossible for her to use the toilet since she is so small and has physical disabilities. She has a small modified potty at home that I am unable to bring with me. Children with moderate to severe Cerebral Palsy or other profound physical disabilities need a changing table. The infant changing tables do not support the height and weight of a 6 year old. That parent is forced to lay their child down on the floor somewhere to change them or go to a large enough dressing room or to their car to change their child. We were on vacation in Disney and where their restrooms accommodated children like Nadiya with their large metal changing tables the public did not. Many people were impatient. Some thought I wanted a stall and was cutting through the line. Twice women placed their infants at the bottom of the table below Nadiya’s feet to change in tandem with me. I had to tell them Nadiya has Cerebral Palsy and that she would kick their infant in the head if they were that close. I told them I was moving as fast as I could and please be patient. Who wants to have to say this once let alone twice?

These examples only highlight a small portion of what happens when a disabled person goes out into the world. I asked you to assess how you feel after reading this. Maybe you are frustrated and find these scenarios upsetting. Knowing what you do now please be patient and educate others who are being insensitive. I said I wondered what Nadiya felt. Honestly I think the frustration is all mine. She knows mommy will take care of her no matter what and that I will be her voice. Nadiya loves being included in the world. She is fascinated by all that we take for granted. That is a reason right there for me to keep fighting for her rights and for her accessibility.

There are plenty of wonderfully accessible places in the world too. I will highlight those in a future article. They are the model for the rest of the world to emulate. I have great hope that someday all people will have access and their mobility needs will be met much easier than they are now. Until then I will continue clearing the way for Nadiya.