Around the world, for too many women and for any number of reasons, day-to-day living can be a struggle. Physically disabled women face even more struggles and prejudices than non-physically disabled women living in patriarchal societies.
A sizeable portion of the UK population lives with a disability: 14.6 million people in 2021-2022 had a disability, according to UK government estimates, which is 22 per cent of the national population. Author and disability advocate Eliza Hull, in her book of essays titled We've Got This: Stories of Disabled Parenting, says that there are 1.7 million disabled parents in the UK. This just goes to show that a large portion of the population includes mothers who live with a disability. And life is not easy for them, least of all for the judgment that is casually inflicted on them.
Alex Dacy, an American digital content creator/influencer, who goes by the name Wheelchair Rapunzel on social media, has spinal muscular atrophy. She received abuse and negative comments when she announced her pregnancy last year, with people calling her disgusting and selfish. Even when she gave birth to a healthy daughter last month, the negativity continued.
When a woman decides she does not want to be a mother, she may be judged by society and regarded as selfish and making an unnatural choice. Ironically, when a physically disabled woman expresses the opposite choice – in wanting to have children – she is also often labelled as selfish.
Sadly, for a segment of society, there exists a negative attitude that a physically disabled woman should not be a mother as she will not be able to fully care for her child. Whether you have a physical disability or not, motherhood is a choice and not suited or desired by all. Just because you have a physical disability does not mean you are disqualified from the circle of mothers, nor does it make every disabled woman inclined to be one. It's important to note a nuance here, that the case for motherhood is different for those with intellectual or mental disabilities.
I, for one, never felt the urge to be a mother. I have congenital Ullrich muscular dystrophy and respiratory failure. I am a full-time wheelchair user and use a non-invasive ventilator. And although I adore children and love my niece and nephews, I would not consider motherhood, as it does not suit my lifestyle and physical ability. But I have met a few people who have always dreamt of being mothers and have gone on to achieve that dream, overcoming all sorts of prejudice and discrimination.
Ami Hook-Ireland is 27 years old and a mother to Daisy. Amy is a social media assistant for a podcast series in the UK about disability, IABLEd podcast. Ami has several physical disabilities; hearing loss, central vision loss, sensory ataxia and transverse myelitis, and is awaiting results for further diagnoses.
She used a powered wheelchair full time. Shortly after her wedding in 2019, Ami and her husband discussed the possibility of having children, and as she puts it: “We already knew there would be many mountains to climb, a lot of assessments and questions involved.” They spoke to several of Ami’s consultants at length, to make sure plans would be put into place, how closely she would be monitored.
Interestingly, her consultants never doubted the idea of Ami starting a family, and for that she says she is “very grateful". Now imagine a non-physically disabled woman feeling "grateful" simply for a doctor not questioning her choice of starting a family.
While many people – family, friends, healthcare workers and doctors of mothers with disabilities – express their scepticism out of perhaps genuine concern for the baby and the mother or out of being misinformed, the difference in attitudes and expression can be stark and often insensitive to the mothers.
When Ami found out she was pregnant, reactions from her family hurt – "How will you cope?", "How will you care for the baby?", and "Well, how's that going to work?". Despite a scare at 13 weeks, Ami really enjoyed her pregnancy. “I loved watching my bump grow. To my surprise, every medical professional that we met or who was involved with my care, was brilliant. Especially, my midwife.”
Ami is quick to point out that none of the support she mentioned would have been easy to access. But she adds that if it hadn't been for the NGO Enabled2Parent – which supports disabled parents, disabled families and medical professionals – things might have been very different. They equipped her with the right information and supported her in every aspect of parenting.
Ami and her husband live with her mother, who helps care for Ami and helps her care for Daisy when Ami’s husband is at work at his full-time job. Yet, despite the support, Ami is aware how post-natal depression can be worse for disabled mothers due to physical limitations, discriminations and the stress of being surrounded by negative attitudes.
I spoke to another woman who despite disabilities became a mother. Banane Nafeh became a mother at 31 to a daughter who is now 17, and doing her A Levels. At the time of her pregnancy, Banane was an adviser at Disability Rights UK, and she endured various struggles and discrimination for choosing to be a mother. Born with progressive muscular dystrophy of the Emery-Dreifuss type and a heart condition, Banane knew that the idea of motherhood would be daunting, but she had always wanted it.
Five months into the pregnancy, her condition deteriorated rapidly as she became a full-time wheelchair user and lost her ability to stand or walk completely. When I asked Banane what the reaction of people was to her becoming a mother, she replied that much to her surprise, everyone was delighted.
“My parents were abroad at that time, but my husband was supportive as were friends. My carer used to come to the ward and help me, as well as my friends.” Unfortunately, she says, most nurses’ attitudes at the London hospital where she delivered the baby were unpleasant. Just as Banane was leaving the ward, a nurse told her to not worry if it all turns out to be a complete failure. She says: “Though I cried at the time, I decided to pay no attention to the harsh words and I put my trust in God."
Doctors, however, were generally more supportive. Others, she says, were extremely unhelpful as they were constantly questioning Banane’s ability to look after her daughter in the short and long term; social services were even threatening to take her daughter away.
To any third person, concern of social workers may be warranted, but when mothers with physical disabilities do have emotional and financial support systems in place, they should not be judged as being incapable of being good, loving mothers merely on the basis of manageable physical limitations.
For any woman, motherhood can be physically and emotionally draining. For Banane too, it was a delight and a challenge: “I feel the joy that I am a mother. My daughter is a trust that I need to look after properly, and she offers me a lot of support too. As human beings, we all have limitations in one way or another; we are all able in some aspects and disabled in others, hence a sense of solidarity should prevail among one another. Therefore, the idea that a disabled mother is less likely to be a fully active mother is far from reality."
At the end of my interview with both Banane and Ami, I asked what advice they would give to disabled women who want to experience motherhood. Banane’s reply was simple: “Don’t let fear overpower you. Don’t be engulfed in the sphere of society’s negative influence.”
Ami’s advice was that if you hope to start a family, make sure you seek advice from those involved with your care and would strongly recommend contacting the NGO that helped her.
Many of the women I spoke to about disability and motherhood felt that there is sometimes too easy a judgment of their abilities – or what is seen as a lack of thereof. Some of the women might be in wheelchairs and have physical limitations, but they point out that a person in a particular situation can make their own life decisions with the counsel of well-wishers or partners – that is, people who will live with them and support their choices, unimpeded by the biased judgments of society.
