“We always included John in everything.”

I called my grandmother today, after not talking to her for a while.  Yes, I admit, I’m a bad “daughter/granddaughter”.  The excuse I have is that I don’t know when to call her when she’s home anymore (she’s chosen not to have long distance on her phone, so she never calls me), but the real reason is that it’s sad to hear that nothing is going on in her life.

My grandmother is elderly, 88 years old, and voluntarily gave up her drivers license last year.   So she doesn’t get out much (and yes, even though she doesn’t get out much, I still have a hard time getting her on the phone when I try to call).

Today, I called, and after a couple of attempts, I finally got in touch with her.  After asking her what was going on in her life (and hearing “nothing, it’s the same old thing”) I finally found out that my grandmother had written a letter to the Chicago Sun Times.  The title of this post is the title her letter was printed under.

My grandmother was a pioneer in area of obtaining access for people with intellectual disabilities.   Only, back when she started doing activism, people with intellectual disabilities were called “mentally retarded”, if they were called anything.  See, my grandmother’s first born son, when she was 26 years old, was born with Down’s Syndrome.

This was back in the late 1940’s.  Back when the “advise” all doctors gave people who had “undesirable” children was “put them in an institution.”  When Grandma and Grandpa refused, the doctor told Grandma to give my Uncle a bath, wash his hair, put a diaper on him, and let outside to “play” in the snow.  See, by that time, it was late December, early January in Chicago.  The doctor’s reasoning was that John would catch a cold, that would become pneumonia, and he’d die.  It was really for the best, honest.  After all “mongoloid” children don’t live past infancy anyways.

Needless to say, my grandparents got a new pediatrician.

My Uncle John is now 62 years old.  While he was a child, my grandparents fought for access for him.  First, they were part of a co-op of parents who started a school for children with all sorts of intellectual disabilities.  They, the parents, and a few professional teachers they hired, taught the kids real school subjects.  Math.  Reading.  Writing.  Not all the children could learn everything, but they all did the best they could, the children as well as the adults.  My Uncle can read, write, and do very simple math (despite what the people at the State level think he should be able to do).

After the state took over the school, and changed the curriculum, Grandma was able to get Uncle John into a public high school.  After two years, he was “kicked out” of school for being too old to go to school.  There was no “special education” classes back then, but at least getting him into a public school was a blow for access.

Later, after Uncle John was no longer able to go to school, in my grandparents suburb, a bond issue was going to vote for money for the public schools.  My grandparents went to the board meetings, asking if there was going to be any access for children with handicaps.  They were told no.

So my grandparents began a grass roots campaign to stop the bond.  Grandma had a mimeograph machine, and printed out thousands of flyers in our basement.  I remember going around to the houses around my block and putting a flyer on every door. 

The bond issue failed.

A year later, they tried again.  This time, they were going to have access for children using wheelchairs.  My grandparents did nothing, because there was access for somebody with disabilities. 

The bond issue passed.

Grandma has stopped actively working towards access for people with disabilities.  Others, younger people with more energy and time, took up the fight.

But Grandma is one of the pioneers in this ongoing struggle.  You’ll never read her name in a history book.  The things she did stemmed from a sense of enlightened self-interest (by getting access or insurance for John, she was helping others who came after him to get access or continue on the parents insurance after they were adults but still dependant on their parents).  And honestly, she doesn’t think she did anything special.

But she recently wrote a letter to the Chicago Sun Times.  They printed it.  Unfortunately, it was over a month ago, and the Sun Times only archives it’s stories for a month.  But when I googled the title of the article, I found 4 pages of sites that had referred back to Grandma’s article.

I couldn’t be more proud of my Grandma and what she’s accomplished in her life than I am right now.

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13 Responses

  1. What an inspiring story! If you live close to a library, they may keep actual “large city” newspapers for more than a month.

    • My Grandma is going to send me a copy of the paper. When it came out, she bought up all the extra copies she could. 🙂

  2. That’s a wonderful story. Lights up my day. 🙂

  3. Wow!!!!!
    As one of the people who is benefitting from the work your grandmother did, I want to say THANK YOU!!!!!!! I’m a mother of 2 kids who have Autism, and they are guaranteed the right to education, as well as all the services they need. Thanks to your grandmother and people like her.

  4. Thanks for sharing the story of your remarkable grandmother. She did something very special indeed. I am a couple years younger than your uncle & physically rather than mentally disabled, & I remember well the messages about being limited, defective, having no reason to expect anything much out of life, etc. Your grandmother is one of the people who helped change those beliefs & attitudes.

  5. Ditto on what the others have said about your grandmother and her campaign. Back in the 1970’s when I was a student nurse doing maternity rotation a “mongoloid” baby was born to a 40+ year old woman, and we students remember her doctor suggesting that she leave the baby in the hospital and they’ll “keep it comfortable” by feeding him water – ONLY water – and they would call her when it’s time for funeral arrangements. She was so LIVID at that doctor! She already had about 10 kids home all eagerly awaiting their new brother, well aware of his handicaps, and were already making up schedules and plans for his homecoming. I certainly hope no doctor would even think of doing such a thing today.

    Now, as for your grandmother’s phone problem. My husband’s 90 year old aunt would never hear the phone ring unless she was standing right next to it, even with the loud ringer. He would start calling her around 5:30pm and on a good day she would answer around 7, usually not until 8pm. We bought this gizmo from ADCO Hearing Supplies that connects to her phone that has a *very* loud (85 decibles?) ringer plus a strobe light that flashes. We set it up for her 2 weeks ago, and now, instead of taking 2 hours each night trying to get her on the phone, she answers it the first time he calls, usually within 4 rings. She commented to us yesterday when we were there that she’s gotten *so* many more phone calls the past few weeks, people she hadn’t heard from in ages. Gee, could it be that she can now *hear* the phone ringing when they call? LOL It was the best $40 investment we made.

  6. Via lexis nexis (yay for academic servers!)

    I just read your article about Louie. My Down syndrome son has a far different story. He was born in 1946 when no one even knew the cause. Back then, they called it Mongolism. Doctors told us to put him in an institution or, better yet, have him catch a cold so he would die.

    We looked at state institutions and decided they were not for our son, and we couldn’t afford a private one.

    I talked to the superintendent of schools in our district, and he told me about a parent operating a school in Glen Ellyn. They would take him — in exchange for tuition and at least one parent who had to be active in the organization. There were children of all ages, but all were mentally disabled.

    We hired retired teachers, and mothers supervised. I had other small children and couldn’t spend time at school, so I wrote publicity for 12 local newspapers and spoke at various meetings — trying to get either state or local help. Two of the teachers we hired eventually went on to start Lambs Farm.

    When John was 15 or 16, Illinois finally decided to accept these children and he went to a “public school” near home — not a real school but an old house converted to two classrooms — far away from the regular school.

    At 18 he was no longer eligible, and my husband’s health insurance stopped covering John because he was an adult and not in school.

    We found a shelter workshop in Elmhurst, but John was not happy there.

    There was no Special Olympics — nothing.

    I went to work part time and told John he was in charge of watching the house. He felt important dusting, vacuuming and even washing the windows — with furniture polish.

    John and I managed to keep busy.

    We have always included John in everything we did — he has been in 49 states. We were even halfway to Alaska, but my husband got sick and we had to return home.

    The park district here has a program for the handicapped, but John just did not fit in. John is a diehard Cubs fan; he has everything possible that has “Cubs” on it. We even went to spring training in Arizona. We went to a number of games for years, but in the last few it was too hard taking the train and bus.

    In 1988 after my husband retired, we decided to volunteer at the North Chicago VA Medical Center. In the initial interview we talked about John, and were assigned to the nursing home ward. After two months, the head nurse asked if John was strong and could push wheelchairs. We brought him with us, and he did as he was told and felt very important and needed.

    Shortly afterward the hospital opened a ward strictly for Alzheimer’s patients. We were asked if we wanted to transfer and we did. There, we had more opportunities to take patients outside. John would hold a patient’s hand and talk to him.

    In bad weather John played catch with them, rubber horse shoes and basketball (into a laundry basket). Once he even fed a patient who refused to eat. Then the hospital closed the Alzheimer’s ward, but the American Legion state commander had raised some funds and remodeled a large room into what became a clothing room where patients could get donated clothes free of charge. Donations rolled in, and we went to work there. I examined the donations, my husband sized and marked them, and it was John’s job to put them on the shelves or hang them where they belonged.

    Even after my husband’s death, John and I continued. The patients got used to John, even asking him where certain items were. John knew where everything was.

    On the few days when John didn’t want to go, the patients asked for him. John has more than 11,000 hours at the medical center.

    We retired a year ago. I know that after living in a home where he was wanted and loved, John would not be happy living someplace else. I have seen stores who hire Down syndrome people as baggers, and no one seems to complain. Right now, I keep John busy taking out garbage, vacuuming and when we have only an inch of snow, letting him shovel it.

    Right now he is happy doing those things and listening to his radio. As soon as the baseball season gets started, he will be glued to the TV.

    I sympathize with Louie’s parents, but I don’t think it is the state’s problem to take care of their son.

    • Thank you!!!!!!

      I couldn’t find it anywhere, and there’s a few things in my grandmother’s letter I never knew, although she always told me she had worked at the school as well.

      But thank you so very much for this!

  7. I am all misty-eyed.

    I am so grateful to your grandma, I can’t even say.

    My 4yo twins are both on the autism spectrum, and are beneficiaries of the work your grandma began all those years ago.

    My boys are both high-functioning, and I’ve had a lot of conversations over the past year about what sort of treatment they would have received in public schools if they’d been born in some earlier era. I’m extremely grateful that there are services in place, and research has been done and there are professionals who are trained in how to best help my sons reach their full potential.

    I’m so inspired by your grandma’s story. Thank you so much for sharing it. And thanks to your grandma, for blazing the trail I walk today.

  8. I think I actually read that article back when it came out, your grandma is awesome! I second the idea of getting a doohickey for the phone that makes it easier to know when it’s ringing. If she’s on a cell, it helps to remind her to set it to ring and vibrate, that tends to be harder to miss.

  9. What a great story. I helped a very good friend who became disabled, and found out what a struggle it was for a disabled person who wants to be independent to 1) get government help 2) get long-term help from church and friends, and 3) find employment. I think a lot more can be done to help disabled people move towards independence and find employment.

    Your grandma is an unsung heroine, and I am inspired and grateful to her and all the other mothers who didn’t give up on their disabled children.

  10. […] “We always included John in everything.” I called my grandmother today, after not talking to her for a while.  Yes, I admit, I’m a bad […] […]

  11. Thank you so much for sharing this story… wow… just wow. Your grandmother and your uncle are inspirations. How your grandmother stood by your uncle gives me a much welcome reminder of what is good in the world… thank you for sharing that.

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