Impact Feature Issue on Stories of Advocacy, Stories of Change from People with Disabilities, Their Families, and Allies (1988-2013)

What does it mean to affirm and support sexuality as part of life for youth and adults with disabilities? That was the focus of the 2010 Impact issue on sexuality, which covered topics including sex education in homes and schools, personal stories of marriage and parenthood, and legal and ethical issues for service providers. Among the stories in that issue was this one from new mom Mai Thor McIntosh.

As a woman with a disability, I don’t always anticipate every choice I make to be difficult and challenging. Actually, I see a lot of things in my life as easy and simple because of how I choose to live my life as a disabled woman. Most people with disabilities will tell you that we want to be treated in the same way as everyone else. We want the same chance to be able to live our lives. This is true for me, too. My disability isn’t the main anchor in my life from which all other things stem. I define myself as disabled, and yes, it does impact how I live my life. However, I don’t make decisions for myself strategically around the fact that I have a disability. I took the same approach to pregnancy and motherhood as I have done with most things in my life, by making good decisions and just letting things happen by themselves.

For me, getting pregnant was not planned. I did it the old fashioned way. There were no visits to the doctor, no exams, no specialists. I never got to ask the question, “As a woman with a disability, am I able to have a child?” That question pretty much got answered for me. At first, I was extremely excited. Then, I started asking myself questions about how things would go for me during the next nine months. Was I scared? Yes. Not because I was a pregnant woman with a disability. My concerns were just the regular fears, worries, and stress that any expectant mother would have.

Everything was going well during the first six months. I was eating well, the baby was healthy, and I was expected to carry to full term. During one visit to the OB/GYN, however, it was discovered that I had high blood pressure. My bottom number was extremely high and I was told this could affect the baby’s heart rate by slowing it down. The clinic staff whisked me away and admitted me into the hospital promptly for further monitoring. Fortunately, the baby’s heartbeat was strong, so my blood pressure was not affecting him. After lying down for a couple hours, my numbers returned to normal and I was able to leave the hospital. I continued to have blood pressure issues throughout the rest of my pregnancy. I was admitted about three to four additional times until I had my son.

My doctor sent me to a perinatal specialist for my blood pressure issues. He said because I had polio and have no use of my legs, my body was compensating for being pregnant by increasing my blood pressure. He also said that this was very common for pregnant women with paralysis from the waist down. He recommended that I not carry to full term but have a scheduled C-section at about 35 weeks. He said that going into labor and delivering the baby naturally might increase my heart rate too high and put the baby or myself at risk. I would be put under general anesthesia for the C-section. After hearing all this, I again sort of just continued on with my mantra of letting things happen by themselves. The specialist gave me a more high powered ultrasound of the baby and the results were very good. The baby was doing just fine, which helped put my mind at ease. Physically, the last three months of pregnancy were very difficult. To make matters worse, my glucose test determined that I also had gestational diabetes. From that point on, I had to check my blood sugar level before each meal. I ended up seeing two different doctors twice a week. I was also getting big and moving around became difficult. I could not transfer easily out of my chair any longer. My husband had to drive me to work every day because I was not able to get in and out of my car. I was pretty miserable.

In the end, it all worked out fine. Two days before the C-section, I underwent an amniocentesis to make sure the baby’s lungs were developed enough to be delivered. The results of the test were good, which meant the C-section would proceed as planned. Surgery was scheduled at 9:00 a.m. on January 28, 2009. My son, Matthew was delivered at 9:53 a.m. He weighed 5 pounds, 8 ounces. I woke up in the hospital room, struggled to keep my eyes open after all the anesthesia, and only managed to do so because I wanted to see my baby so badly. He was just so perfect and beautiful when I first saw him. The first thought that came to me was, “This baby is way too cute to be mine. They must have switched him at birth!”

All in all, pregnancy was not too bad. Being totally asleep during delivery seemed to be a breeze, really. I didn’t have to do anything! After all the excitement with pregnancy, the C-section and the hospital, it occurred to me that the real hard part was just beginning as we brought Matthew home. I think my concerns graduated to the worried stage at this point. I thought about the months to come when Matthew was a newborn. I wondered how I would be as a mother and if I would “perform” up to par with non-disabled moms. I thought even further ahead and wondered how I would handle things when he began to walk and run and what I would do if I couldn’t keep up with him. Would other kids tease him in school about having a disabled mom? So many things went through my head.

In the beginning it truly was easy because he was so tiny. Wheelchair users usually require support when picking things up, especially if it’s heavy. But Matthew was so light that it didn’t require a lot of effort. It’s when he became heavier that support became an issue. Using the edge of a bassinet or crib to support my torso works well when both hands are being used. Luckily, my hand dexterity is good and I have never dropped him, which is more than some abled-bodied moms can say. There are lots of other logistical things to consider when a baby comes into your life, but I guess that’s just what happens whether you have a disability or not.

The truth is, babies are really smart, resilient, understanding, and loving. If you show your love, respect, and support to them, they will do the same for you. Granted, he is only 18 months old, but Matthew “gets” that mom is different. He knows that I use a wheelchair, and to him it’s not a big deal. When he wants to be picked up, he will climb up on my footrests and I’ll pick him up. If he wants to show me something and he is up the hill in the backyard, he will come down the hill and show it to me. He has it figured out more than I do! I think when he was about six months old I told myself that I would allow him to be the person he wants to be without letting the insecurities I have about my disability get in the way. Matthew seems to be fine with everything so far, so instead of worrying about him growing up as a little boy with a mother who has a disability, I’m going to just focus on him growing up as a little boy. I’m back to going with the flow again.