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A friend and I were chatting recently about our experiences of living with spina bifida (SB). SB is a medical condition that occurs when the spine and spinal cord of the fetus don’t form properly in the womb. Severity can range from being mild to causing serious medical problems, depending on where it occurs on the spine. As a result of SB, both my friend and I rely on wheelchairs for mobility and experienced many surgeries in childhood through adulthood.

In my case, I have surgical scars resulting from a spinal decompression at age 12, more surgery on my back at age 17 (causing me to basically lose the summer before my senior year in high school), having many orthopedic surgeries on my feet and legs during my 20s (causing stress as I gradually lost my ability to walk while my peers were pursuing careers, getting married and starting families), surgery to detether (i.e., scraping scar tissue from) my spinal cord at age 34 (causing me to decline an invitation to the White House for the Americans With Disabilities Act signing ceremony), and 9-plus surgeries to close pressure ulcers (bed sores) caused by a health care provider who wrongly closed a pressure ulcer over an abscess at age 60 (causing long periods of being bedbound to heal — not an ideal retirement). 

Still, for some children with SB, the surgeries start at birth and continue throughout their early developmental years. Fortunately, the incidence of SB has decreased both due to the promotion of folic acid for women of childbearing age, and to the ability to detect SB and possibly repair it in the womb — a huge medical advance.

Despite our living with multiple surgical scars, however, my friend and I agreed that the more serious scars are the emotional ones that we as disabled people have experienced due to discrimination. 

Some experiences of discrimination that I have faced as an adult include:
• being denied the opportunity to apply for a job at a small college simply because the human resources office was located up a flight of stairs;
• being referred for not even one temp position when I signed up with a temporary employment agency, despite having a Bachelor of Arts with honors and a typing speed of 60 words per minute;
• having to argue with a flight attendant who insisted that my pressure relief seat cushion, a medical device, be stored in the overhead compartment of the plane, leaving me vulnerable to a pressure ulcer (I won this dispute to protect my skin while on the plane. I relayed to the flight attendant that I knew my rights under the Air Carrier Access Act and she backed down);
• being asked by a health care technician, when I asked for an accessible exam table, “Why did the doctor order this test if you cannot get up onto the table?” (as if patients should accommodate themselves to the environment versus adjusting the environment to accommodate the patient). 

These confrontations with architectural and programmatic barriers, plus the poor training of some service professionals, occur frequently. Taken individually, they are upsetting but not earthshaking. However, the barrage of incidents, especially those we experience at an early age, can be soul-crushing. They can cause some disabled people to give up on having a life, especially if they lack support systems. Many are discouraged because they don’t know that there are resources beyond one’s family and friends that can help.

Instead of lamenting and giving up, both my friend and I have channeled our frustration about discrimination into working to make society more just and fair for ourselves and for other people living with any type of disability. We were fortunate to have the self-confidence and support to do so. 

For both of us, this has involved working to pass the ADA, serving as staff advocates at independent living centers (like Lawrence’s Independence Inc.), and serving on various boards and committees to educate and advocate about accessible communities and disability discrimination. 

For my friend, this also involved working as a constituent services coordinator for her state congressperson. For me, it has involved earning a Ph.D. and working on research (at KU and other places) to promote participation in society and to remove barriers to health care for people with disabilities. 

Disabilities are prevalent in the U.S. population — estimates are that 1 in 4 adults experience some type of disability that limits daily activities, and the numbers increase as people age. One in four! So, doesn’t it make sense to increase disability awareness and community accessibility to prevent the emotional scars caused by disability discrimination? Millions of Americans would answer, “Yes!”

In Lawrence, to name just a few examples of community awareness and accessibility for people of all ages: We have an accessible transit system, a shared use path around the city that is mapped to communicate accessible sections, a recreation center with accessible equipment, an accessible playground, and an ADA compliance administrator charged with making city facilities, events, and practices accessible to all. 

Additionally, many private businesses have complied with the ADA in making their facilities fully accessible to all citizens, perhaps taking advantage of a tax credit for making changes to comply with the ADA.

This does not mean that we have a fully accessible community, as significant barriers remain. But it does mean that we as a community have raised awareness about disability discrimination and that we are moving in the right direction. And that is a win for all citizens.

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