Daring Dis-abled Parenting

By Joanna Karpasea-Jones
Issue 145, November/December 2007

The author and her family, from left: Lucia (7), Andy, the author holding baby Yanny, Jerrica (10), Alicia (5), and Jacinta (11)When I fell in love and moved in with my soul mate, I was 16 years old—in itself a big problem for my parents. But I also have cerebral palsy, a result of my premature birth, and my partner has hereditary motor and sensory neuropathy, a condition in which messages to his brain are “scrambled,” causing muscle wastage, bone deformations that require surgery, and decreased sensation of pain, heat, and cold. Any children we would have would have a 50/50 chance of inheriting the disability from him. Clearly, we had some thinking to do.

I assumed that we wouldn’t take this risk, and suggested to my partner that I be artificially inseminated with sperm from a donor. He was totally against the idea, saying that he didn’t want to see me pregnant by another man—even if he was the daddy, the child would not be biologically “his.” I understood this. Nor did adoption seem a choice, as then I would never be pregnant or give birth—a thought that was heartbreaking to me. And in Britain in the 1990s, it was difficult to adopt if you had any kind of physical health problem. Even today, being only slightly overweight disqualifies you from adopting.

We decided to team up with a genetics charity and volunteer to write genetics coursework for General Certificate of Secondary Education (GSE) students. (GSE is basically equivalent to a high school diploma in the US.) Perhaps these kids, then only two or three years younger than I, could shed some light on what they would do.

We presented our case in a fact file for students of sociology and ethics, and a few weeks later were inundated with letters that the teachers had passed on to us—heartfelt letters full of wobbly writing and spelling errors, saying that yes, we should go for it and have a baby, because we were disabled but were still glad to be alive. These children were so spirited and impassioned that, reading all their letters, I had tears in my eyes.

Then, when I was 17, we went to a genetics counseling session, where I learned everything I could about genes and my partner’s disability. We were told that any affected child would have the condition at a similar level of severity as my partner. Well, he could walk, drive a car, carry heavy things, and do nearly everything an able person could do. That clinched it—we decided to go ahead. Nearly everyone in our families was disabled anyway: me, my partner, his brother and father, my aunt and uncle. If the child was affected, she certainly wouldn’t feel the odd one out. Normality is subjective; to us, disability was normal.

My pregnancy caused a sensation. My own mother told me we had been irresponsible to take such a risk and asked me to get an abortion. She said that, with my cerebral palsy, I would never be able to care for the baby, and it would end up on the UK’s “at risk” register, which lists children who are either being harmed or are at risk of being harmed (and whose families are then closely monitored by the child-protective services). My partner’s mother said that I wouldn’t be able to carry a baby to term, and that I’d need a cesarean section because I was too weak to give birth. Obviously, kids are more open-minded than the adults who raise them.

I felt pleased when I found myself 11 days overdue without so much as a twinge. That’ll show them, I thought. I was already six centimeters dilated before we left for the hospital.

The hospital staff seemed to have no idea about mobility impairment when they brought out stirrups for the pushing stage and expected me to use them.

“I have CP. My legs don’t move like that.”

“Well, how will you give birth, then?” asked the midwife.

I told her I was going to do it sitting upright, and she’d just have to hold my legs. And that’s what we did. I pushed my first child into this world like most other women, after being in the delivery room for only six hours—not bad for a first birth.

The postnatal experience was even more interesting. They had only two bathtubs on the ward, neither of which I could get into; that meant that, for my two days there, I had to rinse down at a sink. Mothers were expected to fetch their own breakfast, and I couldn’t carry plates without a tea trolley, so by the time I’d gotten a midwife to help me, most of the food was gone. The abled mothers had first pickings. The plastic cribs were positioned too high for me to be able to lift my baby out. I solved this problem by putting the crib on the floor and sitting in a chair so I could reach down to pick her up. My balance was too poor to carry her as the other mums did, so I had a pram on the ward with me and wheeled her around in that.

The midwives followed me around incessantly, saying they wouldn’t let me go home until they’d seen me change a nappy, and asking such questions as, “How will you take her up the stairs?” “I won’t!” I told them. The baby would sleep downstairs until my husband got home. I was perplexed that they could think of only one way of doing things. In my opinion, the true disability is a lack of flexibility.

After we’d returned home, the health visitor—the nurse who came to weigh the baby and give me parenting advice—asked more questions than I did. She seemed to be learning more about me as a disabled parent than I was about parenting.

Of course, when we used cloth nappies, when we decided not to vaccinate our child, when we set up the Vaccination Awareness Network UK, and when we enlisted a homeopath, we felt others were judging us as disabled parents who had no idea how to be parents. It’s hard enough to be holistic when the whole world seems to be drowning in controlled crying, vaccinations, disposable diapers, and tacky advertising; it’s doubly challenging for a disabled teenage mum to raise her child in a spiritual way without people thinking it’s because she’s just plain different.

Going out and about with my daughter was an adventure, especially as the public toilets for the disabled were also the baby-changing rooms. Often, when I needed to go, there’d be a queue of mums backed up outside, waiting to change their own babies, and I’d be rushing to finish and leave and not hold up the queue. As for changing my own baby, the table was too high for me to lift her onto it, and even if I’d managed, she could have rolled off and fractured her skull. All changing rooms, therefore, were unusable to me. Instead, I would lower the back on her stroller and change her in that.

The day my baby took her first steps was an emotional one for me—I hadn’t walked till I was nearly five, and here she was, walking at only 15 months. She’d wobble, reach out, grasp my leg for support, and I would just smile down at her and tell her there was no sense learning from Momma—I couldn’t do it any better than she could!

When our daughter turned two, we got the wonderful news: She wasn’t disabled in any way at all. We went on to have three more girls; none of them has inherited her father’s disability.

Read: Jo’s Baby Care Tips for Disabled Mums.

In 1997, Joanna Karpasea-Jones set up the Vaccination Awareness Network UK, a pro-choice organization for parents concerned about vaccination issues. She is the author of the books Vaccination: Everything You Should Know About Your Child’s Jabs and More, and Breast Milk: A Natural Immunisation, both from Exposure Publishing. She is partner to Andy, who runs a homeschooling group, and the mother of four daughters—Jacinta (11), Jerrica (10), Lucia (7), and Alicia (5)—and a baby son, Yanny (6 weeks).

Photo provided by the author.

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