Intro
My story is one of a surrogacy project that did not happen. I thought it would be about doctors not listening; but looking back, I have realised this story is as much about my own unacknowledged prejudices as it is about theirs—ableist lines of thoughts about my own body, about disabled bodies, useful bodies, worthy bodies.
This was before learning from the community, before I had accepted the aftermath of my neuropathy, and reconciled with my disabled self. Let’s face it, I did not know what a disabled life was about, at all, before living mine. I simply had not considered it.
After writing the piece, I could not stop thinking back to that moment I saw Alison Lapper Pregnant on Trafalgar Square about 20 years ago. How it left me a bit blank. I did not know what to make of it—compassion or any emotional response: sub-zero!
It is as if I am seeing the work for the first time. I see a most humanely beautiful pregnant body.
I give my most sincere thanks to Marc Quinn and Alison Lapper for giving me the permission to feature the work Alison Lapper Pregnant alongside my story.
And There Would Be No Baby
In our early 20s, a special friend of mine and I decided that when the time came, if I was still fresh enough to, and it was still his wish, I would carry his child or children.
This moment came in 2018, 3 years after I fell ill with an acute neuropathy that nearly saw me out. Disabled, weak, in deep pain at times and with profound fatigue, I was otherwise healthy, and I assumed my eggs would be as good as any other 40-year old. The surrogacy would be my second pregnancy. Therefore, not a complete newbie and realistic regarding the joys of baby growing.
For ourselves, my husband and I were already uncertain about adding to our family before I became disabled. But now, we felt—or was it I?—that the illness had made the decision for us. Conception was not really problematic, but we were just about coping day-to-day with my care and our family unit. The prospect of raising a second child just felt insurmountable for us at the time. I felt so much guilt already towards my child and husband. How could I inflict this remnant of myself onto yet another human being?
The surrogacy felt so important to me. My body would not let me hold my husband or my child, my body would not let me go where I needed or wanted to, my body would not let me read or use my mind, but growing a baby? Yes, my body still could. Once that egg would be cosily nestled in my womb, there would be no stopping it. The process of pregnancy is largely governed by the autonomic nervous system —it’s nearly on autopilot, little need for motor neurons. I was determined to put my body to good use, for my friend and his partner and for myself.
We discussed the project at length. I contacted my neurologist for advice. I was somewhat concerned by the risk of relapse as the neuropathy I contracted can be triggered by pregnancy, and what to do about all the drugs I was taking?1 And all these other residual symptoms? He had very little to say, which is rather unusual for the character, and gave me an enthusiastic green light.
The intended parents visited fertility clinics and sought legal advice regarding the surrogacy pathway to legal parenthood.2 And on we went to see an obstetrician to discuss how the pregnancy could or would be managed, monitored and how the delivery would be likely planned, possible post-partum facts we should be aware of considering my disabilities and chronic fatigue. We were not discouraged by the obstetrician and he was all politeness. He acknowledged there was potential for complications, but stayed very vague and brief. Most questions were met by “we will help you with that.” But when, why, how? The consultation ended quickly with a cheerful “get back in touch when you are pregnant.” We left rather deflated and a bit dumbfounded. Was our surrogacy project so odd or banal?
The following days, silence… I felt empty. “We will help you with that” kept looping around in my head. It had the music and the false reassurance of “we will make sure you’re comfortable.” I had been told these words many times while in intensive care during the acute phase of the neuropathy. At some point, a top of the range super duper pressure-redistributing mattress was brought in. My husband and I were joking about it with the nurses; they said it was the most expensive bed in the whole hospital. By that time, I was tetraplegic, so we thought it made sense. My husband left with our daughter, she was 4 then. We said good-bye as if we would obviously see each other the next day. Later, my breathing became really weak and so tiresome. The central line came in, and other machines started to crowd my bedside — all these hours watching House MD had kept me rather calm until then, but now I felt anxious. In a whisper, I kept on asking what was going on, and inevitably I was met with “we will make sure you are comfortable, don’t worry,” “what do you mean comfortable?” I was very comfortable on that fancy bed! “Why should I not worry?” Finally, I cornered a nurse. “You have not been told?” she looked a bit grave. “Let me get a doctor.” Everybody was getting ready to put me in a coma and hook me on a ventilator for an unknown period of time. By an act of grace or the action of intravenous immunoglobulins, I was spared that trauma, but that’s another story.
In the end, I cannot remember when we all got back in touch after that obstetrics appointment. The reluctance to discuss potential complications filled my friends with doubts. They had decided they would not risk my health and our family. The uncertainty was too great.
Comfortable… comfortable… COMFORTABLE! Pounding, screaming in my head.
So, we all agreed to shelve our surrogacy project. Maybe we should have sought other medical teams. Was it because I was disabled? Disabled people are often not thought as sexual beings, and they still have to defend their reproductive rights.3 Was it too alien to think of me pregnant? Was it because it was for a surrogacy, a mixed-race surrogacy? Maybe it was for none of these reasons. But more than anything else then, I felt that as a patient, I had again been belittled, deprived of agency over decisions about my body.
Information withheld, a wall of silence…
It may be the simpler matter of the doctors not knowing, or not wanting to say not knowing. I wish we had been met with more compassion. Maybe we would have come to the same decision, but it would have been an informed decision, our decision.
And again, this feeling of grief for an abled body gone.
It could be that we did not want it enough.
It could be that I did not want it enough.
A few years later, I would learn that sodium valproate was a big no-no during pregnancy.
In the UK, legal parenthood can (only) be transferred by parental order or adoption after the child is born.
Disabled women face significant inequalities in pregnancy care.