My first wife and I were married in January 1967 (I’ll refer to her as Katy) —  we were both 19 years old.  Today is Katy’s birthday, and I dedicate this post to her memory. While she is not the first girl I remember falling in love with (that distinction goes to Joanne MacNett, who I knew before I started school),  Katy is the second girl I remember falling for.  And, Katy was a force that influenced me during more than half my life!

When I told my parents of my engagement to Katy they were somewhat surprised– perhaps because Katy and I had been “on-again off-again sweethearts” since about 5th grade. Or, perhaps because while attending school in Virginia the last half of 1965 I had informed my parents, during Christmas break, of my plans to marry a girl there.  But, that relationship was short-lived and ended before Spring came!

I met Katy while attending a school for the handicapped in Wilmington, Delaware

I entered John G. Leach School in 3rd grade — when it was felt I should no longer attend the local public schools.  It was typical, at the time, for the disabled to be accumulated from many different districts and segregated into a single school based on their handicap.   Although riding on a common bus, the blind were taken to one school; the deaf to a different school; those considered retarded went to a 3rd school; and, the rest of us went to a 4th specialized school. My school bus picked me up first each morning and dropped me off last.  Even though I only lived about 15 miles from the school, I was on the bus about 1 hour and 30 minutes each way — we had to pick-up and drop-off students with other handicaps at their schools!

The school was in a 3-story building with a very small elevator. I don’t know what the building’s original purpose had been. The area between the building and the wrought-iron fence around it was all asphalt — which worked fine for us crippled kids!

Katy had attended Catholic schools until starting Leach in 4th grade.  The first time I remember seeing her was at recess — we had different teachers, but we went outside together. Katy used crutches and had leg braces from her shoes to just below her knees. I found her bright smiling face appealing — I was attracted to her from that moment on!

My wife-to-be had been born prematurely, and perhaps with a damaged spine — Katy’s mother had fallen down some stairs only a few days before giving birth.  (I came to learn that Katy had undergone spinal surgery during the year before starting at Leach.)  Weighing less than two pounds at birth, the doctors weren’t sure she would live very long — Katy was 57 years 7 months old when she died of complications several days after the surgical removal of one of her kidneys.

Katy never did grow taller than 4 foot 1 inches. Although, she might have been 4 to 5 inches taller if her spine hadn’t been so severely twisted — medical diagnosis is kyphoscoliosis (her spine was arched/bent front to back and side to side).  But, within a few years of our meeting, Katy had gotten rid of the braces and started using a cane, instead of crutches. Katy weighed around 65 pounds when we were wed — some people said she looked like a porcelain doll in her wedding gown.

Exciting News!

When we learned that Katy was pregnant we were very excited!  Also, somewhat apprehensive — we were still living in our little bungalow next to the stable (for more on that experience follow this link) and hadn’t been able to save much money.  Katy was our only source of income for almost a full year — working as a secretary for a small industrial company in Wilmington.  I had only returned to steady employment about a month before we got the news of Katy’s pregnancy.  And, we had just bought a new car — the old one had become unreliable.  The timing seemed not to have been the best.  However, none of that mattered much.  We were going to be parents and would do the best we could, with what we had available!

One curious thing, unexpected by me, occurred as Katy began to show her state of pregnancy — word began to reach us that some of the older women in the community were wondering how Katy had gotten pregnant.  They speculated that because I was in a wheelchair I “couldn’t be the father!” Perhaps they went to their graves wondering about it — one of many incorrect perceptions regarding those of us with physical handicaps.

Katy’s due date was set for mid-February — her doctor had told us that delivery would be by C-section (cesarean section) because she was so small. As the delivery date came closer we had to make some changes:

  • Katy had to quit her job about 6 weeks before her due date — her office was up a flight of stairs;
  • We needed to return to living with my parents about 4 weeks before delivery because we had no phone in our bungalow — it was in Maryland.

After working the night shift at the U of D, I had gone to sleep around 8am — when I awoke, mid-afternoon, Katy told me she felt some contractions.  After a quick call to the Doctor, the expectant parents and both of our mothers were soon in a car traveling to Wilmington.  I had received instructions not to rush — to take my time.  Which is what I did.  But, the soon-to-be-grandmothers became anxious and started asking why I was taking so long to reach the doctor’s office!

Having been told to stay in the car, I waited for the women to return with their next set of instructions for the father-to-be.  😎  Soon, the four of us were traveling together again.  This time we were going to the hospital — about 10 blocks away.

It wont be long now!

I dropped the trio at the Maternity Entrance and began looking for a parking space. I needed a level space that was open on the driver’s side — otherwise, I would not be able to get out of my car without help.  Eventually, I found a suitable space and pulled by manual wheelchair from behind the driver’s seat.  Using a homemade wooden transfer board, I slid into the wheelchair and pushed myself back to Maternity.  My mother was standing outside the entrance looking for me when I got there.

Katy had been taken to an examination room so I got a nurse to take me to her.  Everything was going well and she was being prepped for the c-section.  After an hour, or so, we were told that the doctor was in the operating room and Katy was taken to him.

I joined the rest of the people hanging-0ut in the waiting room.  My mom, Katy’s mom, lots of people waiting for other women to give birth and perhaps others waiting for Katy — I no longer remember after that time of chaos and jubilation 41 years ago.

Our message came shortly after 8pm — Katy had delivered a healthy baby girl.  The new grandmothers and I were taken to recovery to see Katy and our child!  That is a once in a lifetime experience for me.

Despite the ups and downs of our twenty-year marriage, and ultimate divorce, I will always remain grateful to Katy for sharing it with me!  And, for her role in bringing forth our daughter.  😎

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I’d wager that the word “segregation” causes you to think of racial segregation.  That has been a dominate use of the word segregation in the United States for more than 40 years: the Civil Rights protests during the mid-1960s were focused on “racial segregation.”  Subsequently, Federal Laws were passed making that form of segregation illegal.

However. . . . . .The Merriam-Webster Dictionary defines segregation as “the separation or isolation of a race, class (emphasis added), or ethnic group by enforced or voluntary residence in a restricted area, by barriers to social intercourse, by separate educational facilities, or by other discriminatory means”.

It’s the separation or isolation of a class that I want to speak to here.  Specifically, the class commonly referred to as “disabled” (I prefer the word handicapped).

My mobility limitations have kept, and are keeping, me in a form of enforced restriction or separation:  I DO NOT have the same unrestricted access to the world around me that the able-bodied have!  And, in order for you to understand the restriction I’m speaking of, I ask you to consider whether I can visit you where you live:

  1. Do you have steps that must be climbed, either up or down, in order to enter your house/apartment/trailer/domicile?
  2. Are there other architectural barriers which would interfere with or prohibit my visiting you where you live?

If you answer NO to both of the above questions I’d say that you are living in a very uncommon place.  And, even if you answer NO to only one of the questions I’m likely to be prevented from accessing your residence.  Quite simply, my life experience has shown that I can visit almost none of the people I know.  In my early years, using a manual wheelchair, the few I have visited needed to make some form of accommodation for me: construction of a suitably-safe ramp or physically lifting me (with the risk of injuring themselves and/or me).  As my weakness increased, and I began using a power chair (electrically-powered wheelchair), the only viable option that seemed available to me was to visit people outside their home: on their lawn/sidewalk (weather permitting); in a restaurant, bar or otherwise publicly accessible location!  It is this form of separation/isolation/segregation that has caused me the deepest pain in my life.

Not being able to spend my money in a particular store, because of architectural barriers (a step, an unaccommodating door or aisle, lack of a curb cut); not being able to live in the house or apartment I would like to, because of architectural barriers; not being able to apply for a particular job that I was qualified for but the building or work site was not barrier-free: while the aforementioned can be frustrating/aggravating/hurtful, none of these exclusions are as painful to me as not being able to visit with family or friends in their home.

Following the passage of the Americans with Disabilities Act (ADA) of 1990, many able-bodied persons I spoke with thought that the problems disabled persons experienced in areas of housing, employment, health services, etc., would be corrected/overcome.  As I see it, the ADA was a small bandage on a large wound.

I think the original ADA, as passed, contained less than 18 lines of text.  As these things go, the Act is just a skeleton or framework.  It takes a couple of years after the Act’s passage by Congress before the Rules can be written; where the explicit language is fleshed-out in detail for all to know and follow.  And, there are exemptions and exceptions in some of the rules, to avoid being a hardship on those supposed to follow the rules: restaurants with fewer than 15 employees were not required to be accessible.  Interestingly enough, the U.S. Senate was exempt from being required to provide accessibility to those they supposedly wrote the ADA to protect.  My Government at work to help me…… NOT!

During my entire 30 years and 1 month of employment with the University of Delaware I was the only full-time employee, that I know of, permanently confined to a wheelchair: no one in the Administration was ever able to refute my claim.  There were wheelchair users in the student-body, as well as a broad diversity of other physical/learning/emotional disabilities.  But, high-ranking officials at the U of D reminded me several times that the University would only do the minimum required by law when constructing or modifying buildings/classrooms: meaning, many doors would NOT be wheelchair-accessible if only 1 would satisfy the law!

Until standards of design and construction are put into practice that do not restrict or isolate the “mobility-handicapped”, due to architectural barriers (let alone the many other ways people with physical challenges are still segregated); until we are given barrier-free access to a much larger piece of the American Pie, I have not witnessed the integration I long for!