MSer Sally Darby set up an online network for disabled mothers in 2017. Here she shares her journey and explains why the conversation around disabled parenting needs to change.
I was diagnosed with multiple sclerosis (MS) in 2010 but my symptoms started in 2008. It began with optic neuritis which has left me severely and permanently visually impaired. At the time, I was told I might have a brain tumour. I was so relieved to discover that wasn’t the case. I was diagnosed after a second relapse involving numbness and tingling in my legs, as well as bladder dysfunction. Once the process started, things moved fast. I had an MRI and a lumbar puncture and was given the diagnosis within a couple of weeks.
Of course I was shaken. It’s a huge thing to take on board. I was getting married in a few months and I became fixated on getting through that day whilst fully mobile. I’m glad I walked down the aisle and danced the night away as that would certainly not be my reality now! I am very well supported by wonderful friends and family. My now husband was my rock. But yes, it was a hard time. I once heard someone say MS is not a death sentence, but it is a life sentence. I took that on.
Gradually, I started to accept the hand I had been dealt and live my life to the full with MS. Today, my condition weaves its way through every aspect of my life. It is integral to my being. I don’t believe I can separate myself from it, but I try my best to accommodate it, and work with it to provide the best outcomes for me and my family.
In 2017, I was a young mum with two beautiful girls, both of whom had been born after my multiple sclerosis (MS) diagnosis, and I felt extremely lucky. But I had never met or even spoken to another disabled mum. I felt like the only one in the world! Being a new mum can be isolating and lonely for anyone, but when the additional challenges of disability are thrown in to the mix, it can feel pretty desperate. Since becoming pregnant with my eldest in 2012 I had felt unprepared, isolated and judged. I had done endless Google searches looking for a community of mums who shared my experiences but found nothing.
Despite this, I had a strong feeling that I was not the only one who was feeling like this, and that creating a community of mums who had disabilities would benefit others, too. When I set up the Mums Like Us Facebook group I quickly realised I was right. The group grew quickly and many mums expressed their relief at finding somewhere they could share their feelings and experiences with other mothers who really got it. So I decided to launch the website.
We are simply bringing mums together in a safe, non-judgemental community where they can support and advise each other without fear of judgement. That was the goal at the start, and Mums Like Us does it every day.
Disability and motherhood
There isn’t much conversation about motherhood and disability, and I think it’s largely because of representation. I follow lots of brilliant disabled mums on social media, such as @nina_tame on Instagram, who talks about her life as a disabled woman and mother with unapologetic pride, confidence and ability, whilst highlighting the ableism that still very much affects her. But women like her are only just starting to make their way in to the mothering mainstream.
It is also, in my opinion, because the world of parenting is not geared up for disabled people. High street brands don't cater for the needs of disabled parents. This results in people having to pay huge amounts of money, or get charitable support, to have very simply adapted items, such as accessible cots or push chairs.
Schools, libraries and play groups are often difficult, and sometimes impossible, for disabled people to access. As a result of all this, disabled mothers are all too often left out of the conversation around parenting. Often anti-natal and post-natal care providers in the UK are ill-equipped to support new mums with very specialist requirements. They frequently have to figure it all out themselves. This is an added challenge at an already overwhelming time.
As I have become more confident, through my work with Mums Like Us, I have thrown off the self-judgement (mostly!) so I have stopped worrying about what others may or may not think of my parenting. I am bringing up my girls in the best way I can. I am doing my best, as we all are, and although my parenting has to be different because of my disability, it doesn't have to be inferior. Once you have this confidence it’s easier to block out any shaming.
Mums to be
If you have a disability, and are thinking of having a child, join Mums Like Us! On our Facebook group you can get advice from mums who have the same condition as you. Speaking to others and hearing their stories is incredibly empowering and insightful. They can also offer you invaluable practical advice.
I spoke at length to my MS nurses and neurologist before I decided to try and get pregnant. I would advise others to speak with their medical professionals. It will help them to be prepared for what is to come through the pregnancy the challenges they may face with a new baby. Above all, though, I would say no disabled woman is alone – you can do it and you will be amazing! It takes planning, and forethought, and adapting, but it is totally doable. Not only that, it’s empowering, and it gives you a reason to be grateful for and proud of your body and it’s incredible achievements – however much you feel it may have let you down in the past.
My vision for progress
I would like to see equipment for disabled mums sold in major high-street retailers. I would like to see them in parenting magazines and on websites. I would like mums like me to feel seen, respected and above all I would like them to feel they are not judged for parenting in their own unique and special way. This is part of a much wider societal shift that is needed, a shift that stops seeing ‘disabled’ as an insult and sees it as a neutral term. We need to change society and its attitudes so disabled parents can be CEOs of those high street brands, putting our needs front and centre. We have a long way to go, but we are moving in the right direction!
Visit www.mumslikeus.org to connect to other disabled parents and to find product lists which may be useful to new disabled mothers.