Thea lives with Crohn’s disease and Ehlers-Danlos syndrome and was 23 when she told her doctor she wanted to have a baby.
She knew that becoming a mother was years in the future but she also knew the medical system well and (correctly) predicted that it would take an age to find a suitable cocktail of medication that would work for her and be safe during pregnancy. Thea is a wheelchair user and she knew that becoming pregnant would alter her care needs. Further adaptations to her home might be required and as with many rarer conditions like Ehlers-Danlos syndrome, she wasn’t sure how complicated pregnancy might become.
Thea says her doctors only started to take her request seriously when she presented her partner and Thea reiterated multiple times that they had discussed his agreement to have a child with a disabled person – the implication being: You do know all of the risks, right?
There are 14.6 million disabled people living in the UK today yet there is little data collected on disabled parenthood, with charities focusing instead on disabled children.
When those disabled children grow into disabled adults and start families of their own, their welfare is seemingly less interesting to do-gooders. The lack of representation in society and culture speaks for itself: just five out of 650 UK MPs declare themselves disabled and an Academy Award is more likely to be awarded to a non-disabled actor playing a disabled character than to a disabled actor. This invisibility on a global stage renders disabled people invisible in everyday life, too. Those who want to start families are considered irresponsible, their future children worse off for being raised by disabled parents.
After seeing her initial doctor, Thea saw another specialist who clearly doubted her ability as a wheelchair user to bring up children. “He saw my chair and said: ‘You just need to try harder and then you can walk.’ Then he asked me: ‘Don’t you want to be able to run around and play with your kid?’” That kind of attitude is pervasive in medical institutions and in public spaces where disabled people just want to exist.
Pregnancy and mothering is sold to many young girls as a destiny, a naturally occurring phenomenon, a rite of passage. Although society has moved forward in many respects, attitudes towards who can and who can’t have children are proving slower to evolve. The message seems to be that as pregnancy might be complicated in disabled bodies, it’s probably best you don’t try at all.
Dr Lafina Diamandis, a GP and lifestyle medicine doctor at Deia Health, acknowledges that societal views of disability can impact the care we receive. “There is stigma or discrimination around people with disabilities starting a family (both perceived and real) and this is a barrier to accessing care/specialist advice.”
Conceiving a child is complex for many bodies. Different genders and sexual orientations mean that financial planning for IVF, adoption or surrogacy is a consideration for many couples, particularly LGBTQ+ ones, as well as disabled people.
Similarly to Thea, Emily is in her early 20s and living with severe Crohn’s disease. She’s also bisexual, which she says presents a double conundrum when it comes to future motherhood.
“I have realised recently that I avoid thinking about the future or my hopes for parenthood because it scares the shit out of me. I’m aware I want kids but I also know it’s going to be a difficult process,” says Emily.
The doctor saw my chair and said: ‘You just need to try harder and then you can walk.’ Then he asked me: ‘Don’t you want to be able to run around and play with your kid?’
Thea
There are options if Emily ends up having children with another woman but that creates its own complications. “If I go down the sperm donor and IVF route, I’m unsure if I would be able to put the intention behind the choice to carry a child. If I end up with a non-disabled woman as my partner, I don’t know if it makes sense for me to be the pregnant person. But I also just really want to.”
Emily feels stuck like Thea once did, unaware of the exact risks that her current medication could pose to a future baby. “I’m scared because I would have to come off my medication in order to get pregnant, which is a huge risk.”
The reality is that many of the medications that chronically ill people take are not tested for scenarios like pregnancy. This is in part because of the ethics of such testing but many disabled activists suspect that there is also an assumption that a seriously ill person will not be conceiving. Emily agrees. “I wish my doctors gave me more information earlier on in my treatment. There wasn’t a conversation about whether my meds were safe to fall pregnant on so I feel uninformed.”
Dr Diamandis suggests this lack of knowledge is partly due to the pressure on the NHS to serve mounting numbers of patients after years of slashed budgets, and the ongoing COVID-19 pandemic. “I imagine that such discussions fall short of the ‘best practice’ standards we would all like to see in our healthcare system. That is the challenge of the public health service we work in: too much to do in too little time and a ‘tunnel vision’ approach during consults, focusing only on the matter at hand e.g. treating the disease and neglecting other matters such as fertility or conception.”
Although patients should feel able to ask those questions while being treated, the stigma surrounding disability and the medical trauma that many chronically ill people carry does not make it easy. Dr Diamandis emphasises that the dynamic between doctor and patient also needs to change. “We are still evolving from a system of paternalistic doctor-patient relationships and doctor-led decision-making, which can result in patients feeling less empowered to ask important questions around such issues when it comes to their health.”
Many chronically ill people also take off-label medication – drugs that are intended to treat something else but are prescribed to us as last-ditch attempts. Those choices are made by doctors and patients to help in situations that feel helpless but the longer term impacts of taking medication like this are often left out of the equation.
Emily shares a fear of causing her future child pain, although she knows it is internalised ableism that creates these thought patterns. “I have fears of passing on my illness to my future baby. [Doctors] aren’t sure on the specifics of my illness but it is in part hereditary,” she says. “I know how much pain it’s caused me. I would find it hard to watch my child go through the same thing, I would feel a lot of guilt. I know that isn’t a good reason to not have a baby but it’s a fear I think about a lot.” Many disabled people have friends and family who can reassure them that these thoughts are irrational, just like Emily’s did, but doctors won’t always agree. Thea’s experience speaks to the sheer ignorance that disabled people face, which in its worst form borders on eugenic thinking from the people who are tasked with our wellbeing.
When Thea was 29 and expecting her first child, she was in her living room, excited to meet a new social worker. She believed that this person was there to help her assess changing her care hours now that she was going to be a mum. Instead the social worker turned to Thea and asked: “What made you think you could be a mother?”
This question was based entirely on the social worker’s assumption that being a wheelchair user makes a person unfit to parent. This incident snowballed into threats to remove Thea’s unborn child from the home and intense monitoring of the first months of the child’s life. The ordeal only ended following legal action by Thea’s lawyer husband. She says the experience has permanently marred her memories of being a first-time mum.
As a young, disabled woman who hopes to have children in the future, the hours I spent chatting with Thea have shown me that you can be a disabled parent and thrive. She talked of the joy her children bring her and her home in the countryside while her mother interrupted our call to explain her latest gardening venture. Thea says she would hate to think that her story had unsettled me as a disabled woman who also wants kids. Her specific experience hasn’t but after hearing about everything she’s faced, on top of the many stories that circulate among disabled communities online, I can’t help but be worried.
Now, when I think about how much I want to be a mother, I feel exhausted and wonder whether perhaps it isn’t for me.
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