“Opening the world for people with disabilities and, in turn, enriching the lives of everyone they touch.” – Rha Howel

My mother told me we can either stop living and be so angry that we let this ruin our lives. Or we can try to channel the anger into advocacy for change and turn it into a legacy for your dad.

Little did I know at 14 years old, that conversation held with my mother, in a dark Walmart parking lot a few nights after my father was diagnosed with a terminal illness, would be the driving force that I hold as a reminder every single day to never stop fighting for change.

My dad, a 6 foot tall Army veteran who loved to build and tinker, became completely paralyzed after being diagnosed with ALS, also known as Lou Gehrig’s Disease.

Watching your parent deteriorate right in front of your eyes at a young age is hard on its own. But the disease wasn’t even the worst part about the last four years of my father’s life.

Witnessing his independence, watching his equality and basic human rights be stripped and denied to him because he lived in a world that is not truly handicap accessible was the plight that ignited a fire of rage in my soul to fight, to help make a difference and raise awareness for issues regarding handicap accessibility.

Disability doesn’t discriminate.

It doesn’t affect just one race, one culture, one gender, or even one community. It can happen to anyone at any time, even me or you.

I’m sure my father never imagined that at 42-years-old he would become dependent on his 16- year-old daughter to feed him and brush his teeth.

Or that I would come home alone to find him with his face on the ground tipped out of his wheelchair. With his dark blue legs still strapped in with blood dripping out of his peg tube and vomit on the ground.

Or that I would be with him when he cried inside the grocery store because he recognized people who used to talk to him when he was “normal” who now acted like they did not see or know him once he was in the wheelchair.

My father lived both lives. He recognized the differences, he knew what he was missing out on. And he felt invisible.

Still, my family endured the emotional pain of the diagnosis and prepared for the end of my father’s life. We made an effort to “make every moment count” the last few years of my father’s life. All the while, we had to deal with businesses and facilities that treated my father like a second class citizen anytime we left the house.

Due to flaws in the Americans with Disabilities Act, and how our society refuses to prioritize the importance of complying with its regulations,

individuals with a disability are the largest minority group in the world. They make up 15 percent of the world’s population which is about 1 billion people. China, the most populated country in the world- has about 1.3 billion people. This means the amount of people in the world living with a disability could make up almost the entire population of China.

According to the 2017 American Community Survey One-Year Estimates by the US Census, individuals with a disability living in Oklahoma make up 16.5 percent of the state’s population.

Yet, we never talk about the issues facing this community of people.

The Americans with Disabilities Act was signed into law in 1990, by then-President George H. W. Bush. This law not only protects individuals with a disability from discrimination in the hiring and employment process but provides the exact measurements and lists the facility requirements like handrails and ramps that businesses and construction companies must follow.

The Americans with Disabilities Act is a great start. But it is not enough.

There are many loopholes for builders and business owners to take to “save money” by jeopardizing accessibility.

According to the ADA Network, the act holds a minimum requirement for handicap parking spots that a facility must have. For businesses with 1-25 parking spots it is only required to have one handicap parking spot.

But for every six accessible spots, there must only be one spot that is “van accessible.” These spots have yellow lines on the side of the parking spot to give a wheelchair ramp space to lower. Limiting van accessibility became an issue for individuals like my dad who could only ride in a handicap van and depended on “van accessible”  parking spots to get out of the car.

Due to the insufficient amount of regular handicap parking spots and proper regulation or punishment for parking in them illegally, many able-bodied individuals park in handicap spots illegally for “convenience.”

Individuals who obtain a handicap parking window sign legally but are in “regular” cars or not dependent on a wheelchair are then left to park in the handicap parking spots labeled “van accessible.”

This causes a trickle-down effect and leaves individuals who use a wheelchair van literally unable to get out of their vehicle. This can make the person with a disability and their families too discouraged to even leave their home.

The problem isn’t only with not having enough van accessible parking spots. There is also an issue with the way they are put in and painted. The van accessible yellow line access aisle is only required by the ADA to be five feet wide. But this measurement isn’t entirely functional if a car is parked on the other side of the yellow lines because it does not take into account enough space at the end of the ramp to get off and turn the wheelchair.

Minimum measurement requirements set by the ADA for contractors to follow when building need to be raised as well.

In a handicap shower, for example, the dimensions required for the size of the shower might only be large enough for the individual in the chair to fit in the shower alone. It does not consider one to three caregivers, equipment, lifts, and extra space to move around that would be needed to properly shower the individual.

My family had to reserve times for my dad to take showers at the local YMCA because our shower at home was not accessible. He would only get to take a shower once to twice a week if we were lucky.

I know a young woman who can only bathe every other week because her home is just not accessible or large enough and it is hard for her parents to fit a lift in their bathroom and get her in the shower without someone getting hurt.

If the ADA were changed to increase the measurements and build homes with intent, and made every home handicap accessible, we could prevent individuals from being trapped in their home for holidays, or from being forced to move in old age, or waiting to have a handicap addition built.

If all houses were built accessible we could prevent the people like my father, who slept in a hospital bed in our dining room for four years waiting for the new handicap addition to be built. Sadly, he never got to experience the handicap renovations, he died only two months before the building was completed.

The Americans with Disabilities Act states that businesses and other facilities, have a small list of “primary functions” that must be met, such as: an accessible entrance, at least one accessible restroom stall, and accessible telephones. Other things such as the parking are said to be provided “when possible.”

This does not sound like an inclusive environment to me.

Restaurants and hotels are handicap-accessible in name only. Store doorways are often too narrow and their doors are too heavy, making it impossible to enter in a wheelchair. Families are often separated at movies and sporting events. Handicap bathroom stalls lack enough room to turn a wheelchair around or fit a caregiver in addition.

These are just a few of the daily obstacles individuals with a disability and their families must negotiate, no matter now meticulously they plan when leaving their home. Even with the ADA in place, accessibility in Oklahoma is still a challenge characterized by seemingly small barriers that can range from humiliating to insurmountable.

My family experienced many problems at restaurants. Customers would be asked to stop eating and get up from their table to move so my father could get through the tight space between tables and chairs. It was humiliating. My sister and I have been separated as minors from our parents at University of Oklahoma Football games because there was only one “regular seat” provided next to the wheelchair spot.

Accessibility should not be something employees attempt to figure out when a person in a wheelchair comes through the door. The layout of businesses should already be ready and accessible, which is not always the case.

We do not make individuals of different cultures or races sit at different tables; only in specific seats or in the nosebleeds at sporting events, or movies. We do not limit the amount of people who can sit with them.

So why should we be able to do that to individuals in the disabled community?

Why should we give a group of individuals set limits on the life experiences they can have?

Or deny them the right to live a normal life because our facilities and business are not truly accessible?

Why do we ostracize them from the rest of society?

  It was best explained in a video series published by the New York Times called “Fixes.”

“Handicap accessibility should not be an “addition” that is treated like a luxury item, it should be the standard because it is a necessity for a large group of people,” the Times reported.

If lawmakers in the state of Oklahoma come up with new laws and revisions to the ADA it would better the foundation than we currently have.

Oklahoma could start a trend in the country by being the voice for a community that is often overlooked. And improve the quality of life of many Oklahomans and their families.

Because in this push for equality and diversity that is happening in the world, we are forgetting that we also need inclusivity.

We need buildings in Oklahoma to be just as prepared and ready for an individual in a wheelchair for example, to enter its doors as it is prepared for a tornado to happen.

In most emergency scenarios, society plans to be proactive rather than reactive.

Oklahoma has extra safety precautions and drills for tornados that only happen a few times a year. Most buildings have fire extinguishers and exit signs in case of the off chance a fire happens. We do not wait until the fire is already happening to leave and go buy an extinguisher, we have it ahead of time. It should be the same way regarding accessibility for individuals with a disability.

The emotional toll disability can bring is heavy. There is a stigma and the disabled often feel hopelessness and dependant.

No one will ever understand why handicap accessibility is so important or why they should care until they consider the emotion behind the scenes. 

The caregivers who are spouses, parents, or children, like myself, who live with the luxury of having access to anything and everything they want. With zero limitation on restaurants they can go to, or theme parks and playgrounds they can participate at. They are able to dress and bathe themselves, or pour their own glass of milk.

Caregivers can benefit fully from the opportunities of the world while, at the same time, watching a person they love — who is just as deserving of experiencing life to the fullest — suffer. 

So I ask that you imagine yourself or your husband, wife, child, sibling, or parent as the one with a disability.

I ask that you consider the following, because no one ever plans to be affected by handicap accessibility but it can happen to anyone:

Raise the minimum construction dimensions set by the ADA to make facilities, walkways, doorways, restrooms, parking lines, etc., larger.

Create new law(s) requiring that any new construction in the state must be, not only accessible, but inclusive and functional and treated as a necessity. A great way to test just how functional a facility really is, is to have someone in a large power wheelchair try and use the facility at its busiest hours.

Require businesses to have more handicap parking and enforce stricter punishments for parking in a handicap van spot illegally.

Push to have the disabled community included, and accepted as one with able bodied individuals and given more choices of seating at movies, sporting events, etc. And not be treated as an alien that is undeserving and less important than able bodied individuals.

If the political leaders of our state and nation aware were working to change the ADA, we could prevent the inadvertent discrimination against individuals based on a disability. Fighting for a community that most people aren’t even aware exists will open the eyes of Americans and teach them to show compassion and empathy toward others.

Consider what this author, who is unknown, wrote: “The only disability in life is a set of ingrained social constructs which normalize the oppression, exclusion and othering of people with a disability.”