Between the Lines

Barriers

Marilyn A. Gelman

I fell into the world of accessible public transportation years after sustaining a mild traumatic brain injury in a 1994 car crash. On paper, it looked good. In practice, it was not.

I tried to use a statewide system to attend graduate classes and a county system to go to physical/vision therapy. In the end, I realized that the para-transit systems discriminated against people with disabilities, and they knew, and they chose the status quo. A wheelchair lift on a bus, alone, does not make a transportation system accessible for people living with any of a wide range of disabilities.

As I struggled to make my way in the community, now with the effects of an invisible injury, I collided with many man-made barriers. Some seemed like they would be violations of the Americans with Disabilities Act; most seemed removable; most remain.

Each year, about 1.7 million Americans sustain traumatic brain injuries. The Centers for Disease Control and Prevention estimate that at least seventy-five percent are mild traumatic brain injuries (mTBIs). I am the more common brain injury survivor, not the hospitalized person in a coma. With altered abilities, yet our usual appearances, we try to carry on. Whether intentional or not, our communities often impede and insult us.

A rehabilitation outcomes researcher once said that if people, in general, were kinder and gentler, folks like me would not have to wonder if our rights under the Americans with Disabilities Act (ADA) were violated. But people are not kinder nor gentler, despite increasing populations, including stroke victims and the aging, who share characteristics of mTBI survivors, such as cognitive and memory impairments and hearing and vision disorders.

These are some of the impairments I live with since the crash, all of which are exacerbated when I am fatigued or ill:

  • Sensory. Overload from bright or flashing lights, loud noises, or continual background noise (music or televisions in doctors' waiting rooms) disables me. With compromised functionality, I cannot process information or respond to questions in a normal time frame. My balance is thrown off-kilter.
  • Mobility. I often must move slowly, consciously calculating which muscles to move and how. I am usually dizzy and struggle to stand erect and walk a straight line.
  • Cognitive. I cannot choose one menu option from five; choose this or that immediately. I can't carry more than one or two logic streams at the same time. Often I can understand complex issues but cannot answer simple questions.
  • Communication. I cannot express myself appropriately at times, perhaps giving the wrong answer or misunderstanding the question. Central auditory processing disorder causes arduous telephone conversations.

Organizations and institutions designed to assist individuals with disabilities often have built-in barriers for me and others like me. In the years since the crash, these are some battles I have had to fight and have sometimes lost:

  • Originally I was told if I could not get to the office, sit under bright lights in a crowded, noisy room, then obviously I could not go to the supermarket and so could not use food stamps.
  • The para transit bus system does not accommodate people with disabilities.
  • Disabling telephone answering methods (interactive voice response systems, or IVRs) in legal clinics and many government agencies bar many of us from using their services. When these systems prevent effective communication and keep us off a level playing field, they may be in violation of the law. Music-on-hold, as well as complex IVRs, contributes to sensory overload and reduces our telephone abilities.

Canned music permeates almost every indoor public space, adding difficulties to dining out, shopping, and medical appointments. Service providers hire fast-talking, impatient receptionists and customer service representatives. Despite explanations, often there is no accommodation or sympathy for people whose invisible disabilities are exacerbated under these circumstances.

To me, the most irritating and damaging barriers are the ones that impede my ability to protect my health and my property. Take my neighbor, for instance. Please! Take him!

My neighbor always loved tinkering with cars. His tinkering expanded over the years, becoming more frequent, complex, and damaging to me. From working solely on weekends on his old car, then those of his adult children living elsewhere, he's brought cars belonging to friends and strangers to his driveway for mechanical and body work, including painting for cash. He repairs gasoline-powered snow blowers, lawn mowers, weed whackers, chain saws, and leaf blowers, as well as old diesel cars; sometimes, he welds.

My living room windows are six feet from the property line. His driveway, a foot away, has held as many as three old diesel Mercedes-Benz cars (all his), and there is one stashed in the garage. His childhood dream was to be an auto mechanic; after retirement, his tinkering filled almost every daylight hour.

There was always noise under my living room windows and odors from grindings, bangings, industrial-strength materials, and diesel exhaust.

He began to paint cars, first touching up scratches on his cars, then painting sections, then spray painting an entire car, then servicing cars going off-lease. For weeks, sunup to dusk, he grinded and sanded and coated the same area repeatedly. The noise, fumes, and dust permeated my house. Particles drifted down the alley between our homes, entering my kitchen. He did things in his driveway that a business would not be permitted to do within 40 feet of a school or residence.

Even when not under repair, his cars presented a quality of life issue for me. The fumes came into my house and yard and onto my open front porch each time he started, idled, moved, or stopped the cars. He jockeyed them around many times a day.

Then two episodes, with two cars, caused me to seek emergency medical attention.

He fumbled a car on fire, got confused. I went to the emergency room and remained in a house filled with burned diesel fumes for days.

He happily developed a driveway car painting business six feet from my living room windows; I developed allergy-induced asthma.

I called the police when he began grinding, using a compressor, and banging car parts long before 8 A.M.; he began harassing and bullying me. He "taught" me "lessons" he told his cronies, and he had them bring their cars here for repairs en masse one day.

I involved the police, to no avail. It seemed there were grey areas in the law, and they worked to his advantage. Town officials told me to get a lawyer.

My environment and quality of life differed greatly from that of my neighbors who were not next to his driveway. I would get lungs full of fumes when I went out in the morning for my paper, midday to bring in meals-on-wheels, all day when I took the dog out to the front or back yard. His compressor shook my house; its noise and vibration forced me away from my computer in the living room. After each project, odors persisted for days, concentrating on my front porch with its glider I could not use.

I began the search for a lawyer, as the town had suggested.

A number of law projects were designed to assist impoverished people with disabilities. But their intake processes were disabling. I asked a friend with mTBI to make a test call; her experience was the same.

In the beginning of my search, I thought people running the projects would care if a person with a disability could not access their services. But they did not arrange to accommodate people like me; I could not begin to get my needs met.

Usually the first barrier is the means of contacting the organization. The telephone answering systems did not permit a simple method of reaching a person. People living with TBI's impairments can be stopped by complex verbose IVRs and music-on-hold.

Once I was able to circumvent an IVR by calling a sponsoring organization's office. The person I spoke with was annoyed; she would not relay a message to the legal team on my behalf.

Letters received no responses.

My last attempt at obtaining legal assistance looked promising. I had been able to make contact, survived an interview about my complaint, and was passed on through to a lawyer. She listened, became irate, told me that I was entitled to damages for every day I could not make use of my property because of my neighbor's activities, and gave me instructions I could not follow.

I was to go to the county courthouse, fill out some paperwork, being certain to say this or that, and give them about $250.00. These tasks were impossible for me.

I did not have $250.00; I can not fill out paperwork, unassisted; I could not get to the courthouse. My neighbor uses his wealthy relative's lawyer. Could I stand up to that force alone?

MTBI impairments kept me from following the lawyer's instructions. I was neither strong nor able enough. I was being bullied and intimidated by my neighbor, even without his lawyer involved. I needed more than advice. Progress stopped.

In a roundabout manner, after I had given up on accessible transportation, I learned of a county public hearing. There, a state public transportation organization representative said, on the record, that county para-transit systems did not have to accommodate people with disabilities. To me, given the funding source and other circumstances, this practice would violate the ADA. I contacted my state's attorney general's office.

I was right, I was told. And I was told to find a lawyer. I was assured than any lawyer would be happy to take the case since it might have implications for all the counties in the state.

Once again, progress stopped. MTBI had stolen my ability to source and confer with lawyers.

From the big things in life to the small, the legal system is behind bars for me and the many others living with impairments like mine.

Years have passed since that public hearing; I have not used "accessible" transportation since.

Years have passed since my attempts to get legal assistance for the quality of life issue at home. My neighbor is still tinkering, having spent six hours this first sunny day after a harsh winter season repairing a snow blower. The fumes coming in the kitchen window, the compressor shaking the living room floor, and the loud roars and burps that kept me and my dog under siege on the front porch rendered the day cloudy. Yesterday he worked on a car.


Marilyn A. Gelman's publication credits include The New York Times, The Paterson Literary Review, Modern Romances, Persimmon Tree, and A Cup of Comfort books. She is a copy editor for Easy English News. Her essay, "Scrambled Eggs," will appear in Creative Nonfiction's "True Stories, Well Told" (release date, August 2014).