Disability, Motherhood and Community
by Sally Darby
I hope my daughters grow up knowing that to me, their looks are the least interesting thing about them. This is not to say that they are not beautiful. Good thoughts shine from their faces like sunbeams, as Roald Dahl so beautifully put it in ‘The Twits’. They are kind and loving and energetic, brave and yes... beautiful. Their physical beauty however, is not what makes them wonderful.
When I was pregnant, I heard over and over that all that mattered was a healthy baby. This made me contemplate the enormous value we place on our physical bodies and those of others. Of course, we all want our children to be happy, and good health may contribute to happiness. My question is, are those who are not physically ‘healthy’ worthy of less value and respect than those who are?
I feel I should say here I am strongly pro-choice. In no way am I saying that all women should carry babies to full term, regardless of the unborn baby’s health. I am suggesting, however, that alongside the choice to terminate we should also respect and value those who choose to birth, raise and love a disabled, or ‘unhealthy’, child, without prejudice, pity or judgement. When we say to pregnant women that the only thing that matters is the health of their child, what are we saying to the mother of a blind baby, a deaf baby, a baby with a learning needs, or physical disability? Are we saying that their child’s life doesn’t matter?
This feels symptomatic of a society-wide attitude towards disability that needs challenging, not only for disabled people and their families, but for a happier and more prosperous community in general.
I have Multiple Sclerosis. As a result, I developed a severe visual impairment in 2008 when I was 26 years old. Over the years since then I have developed significant mobility issues and a host of other symptoms that range from irritating to painful and humiliating. While I would not wish this on anybody, I do not believe my value now is any less than it was when I was not disabled.
In 2013, I became a mother. Disability, motherhood and feminism have grown in my life alongside each other. I cannot separate them in my mind. I see the judgement and expectations placed on mothers and I reach for feminism to support me. There is a unique pressure on modern mothers to be wholesome and nurturing while maintaining unrealistic standards of beauty, drive, sexuality and passion. For disabled women there is an extra layer of expectation and judgement. Disabled mothers often feel they fall short of these ideals. They may feel, as I did and still often do, isolated and othered, like mainstream parenting is not accessible to them.
That said, the changes needed to make life easier and more accessible for parents with disabilities are often small: a ramp, a handrail, a seat, a school report offered in Braille. Practical measures like these are such an important step in inclusion.
I would love to see mainstream companies selling cots that a mother in her wheelchair can put her baby in, and accessible pushchairs, baby carriers and car seats. Disabled mothers are applying to charities, crowd funding and spending vast amounts of money to get these essentials adapted. They should not have to.
In 2016, after the birth of my second child, I was yet to speak to a single other disabled mother. I was beginning to feel like I must be the only one in the world. I went to the Women of the World festival at London’s Southbank in the March of 2017 where, in a session about disability and activism, I listened to speakers from the disabled women’s collective, Sisters of Frida. Some of them spoke about their experiences as disabled mothers. I felt certain they would be able to point me towards an organisation that provided community and support for mums like us. I was shocked when they said that, to their knowledge, there was no such organisation active in the UK.
Inspired, I decided to set up Mums Like Us - a network for disabled mothers. I called in favours from close girlfriends including Esther @sylviesigns who designed the superb MLU logo and we launched in April 2017 as an online community of disabled mothers. There is a Facebook group, exclusively for disabled mothers, where we support, advise and boost each other. It’s a wonderful space free from judgement or criticism but despite the support we found amongst our community there were many conversations about a lack of understanding from society at large. For this reason, I took to Instagram, in the hope of raising the awareness of a wider audience of the issues faced by disabled mothers @mums_like_us. I want to show that disabled mothers are here, and doing an excellent job at parenting, while making the necessary adaptations to make it work. We are women who have shown extraordinary creativity, determination and resilience and I am proud to highlight our stories on the website, alongside my own blog posts and some more practical information about parenting with a disability.
I am not sure where Mums Like Us will take me or how it will influence my parenting going forward. I hope I will continue to teach my children that their bodies are incredible; that they should be proud of them, enjoy them, take pleasure from them; that their bodies need to be loved and nurtured and well fed and moved to stay strong. First and foremost, however, I want to teach them that when life gets tricky, it is not their body or their looks that will get them through. It is their minds and their hearts, their family and more often than not, their girlfriends.