Mother of all Lists — Life As A Disabled Mother

Life As A Disabled Mother

This list is a real eye-opener.Sally founder of ‘Mums Like Us’ network not only sheds light on the ‘big picture’ issues of parenting with a disability, but also the accumulative day-to-day frustrations that exacerbate the already challenging job of Motherhood. She also proves, yet again, how remarkable parents are at ‘digging deep’ and finding a way.
I became disabled through Multiple Sclerosis ten years ago, at the age of 26. I’m severely visually impaired and have significant mobility issues.
Five years ago I became a mum for the first time. I now have two beautiful, crazy, smart daughters. Being their mum is the most important thing in my life. It’s what gets me up in the morning, what keeps me moving and what gives me the motivation to talk about disability and parenting.
When my husband and I decided to try for a baby, we were well aware of the judgement we would face and the complications we might experience.
I also knew, however, that being a mum was what I had always dreamt of and I didn’t see why MS needed to stop me living out that dream.
I’m delighted to be writing this list. I’m going to try to explain some key points about being a disabled mum – both the good and the bad.

I can’t speak for all disabled mums. This is my experience alone. I do believe, however, that there is something unique about the life of a disabled mother.
On my Facebook groups, Mums Like Us – a network for disabled mothers, I see over and over again the same types of challenges and the same pride and determination.
These mums are doing a really good job. Parenting is hard for everyone. Disabled mums are dealing with the highs and lows of parenting, whilst living with the additional challenges of disability and chronic illness. They are inspiring, they make me believe I can do it too.
So, here we go… what is it like to be a disabled mum?
Isolating – When I first became a mother, I felt like the only disabled mum in the world. I had a major MS relapse when she was about six months old. This is quite common as pregnancy hormones ward off the symptoms. The disease then bombards you post partum when you’re at your most vulnerable!
Thankfully the relapse was treated seriously and I was put on some excellent medication that helped level things out. During that time, however, I felt very alone. I have an incredibly supportive family and a brilliant group of friends but I needed people who got it, who understood what it was like. I spent hours trawling the net looking for advice and support for disabled parents. I drew a blank. Even now, when I have my amazing online community, it can feel lonely.
When I walk around town with my girls I am hyper aware that I am the only disabled mum around. My difference makes me feel scrutinised and sometimes makes me want to retreat in to my shell. Having two kids, this isn’t really an option. I am getting better at owning my disability, holding my head up high and trying to be proud of myself, but I have my moments of doubt and insecurity.
Daunting – Making the decision to try to become a parent is always daunting. For me, there were additional concerns surrounding medication, my health, practicalities etc. We spoke at length to my health professionals. We were told that there was no medical reason why we could not do it. MS is not in my family so we had no reason to believe that it was hereditary.
I was told pregnancy would probably bring a bit of a relief from the symptoms I had been experiencing. It all sounded… hopeful. But I was nonetheless enormously apprehensive. Could this body, that had let me down so badly, really cope with pregnancy and birth? Could I handle the physical and emotional demands of parenting? Would my child resent me and my disability? The doubts and fears were endless.
Anyone who has ever yearned for a child will know that however longs your ‘cons,’ list is, your ‘pros,’ list will always be more compelling. I yearned for, longed for, needed to be a mother. So we went for it. Things didn’t get less daunting when I had my first. When the relapse set in I had serious times of, “Oh shit. What have I done? I can’t do this.”
I was acutely aware of the judgement of others, to the extent that I assumed judgement where there was almost certainly none. My insecurities were rife and they prevented me from enjoying parenting as much as I wanted to.
There were also practical complications. I couldn’t carry my baby around, I struggled with the push chair, I couldn’t see her when she toddled off at play groups.
Eventually, however, I found ways to deal with the problems. I slept downstairs with her when my husband wasn’t there to get her up the stairs, I carried her around in a soft carry cot, I dressed her in vibrant and super visible colours. Ultimately though, I very slowly began to ask for help. Little bits here and there… lifts to baby groups, a friend round to help at bath time when my husband was away.
I began to realise that, it’s all a lot less daunting when you ask for help. I began to give my friends and family the credit they deserved. They weren’t judging and pitying, they were empathising and asking if they could help. Their support was invaluable and by the time she was two I felt ready to take the plunge for baby number two.
It was after her arrival that I started Mums Like Us. I just knew that there must be other mums out there who had faced the same fears I had and who needed community. I would like to say it was a purely altruistic venture, but that would be a lie. I needed it.
Since creating the group, my whole attitude towards disability and parenthood has changed. I now believe that we can all parent if we have the simple adaptations and support we need. We should not be ashamed or embarrassed. Instead we should be proud of our abilities and we should fight for the world of parenting to accommodate us without othering us.
Frustrating – The truth is that the world of parenting is not, as the world in general is not, geared up for disabled parents. At first I only noticed my own limitations and the barriers I felt personally to being the best mum I could.
Now, however, as I get to know more and more disabled mums, I see the wider complications. I cannot count how many times I have turned up to a baby group to find it is accessible only by stairs, or that you are expected to leave the push chair at the door and carry the baby in.
There are mums on the facebook groups who have had to crowd fund adaptations to cots and mobility scooters. In some parts of the country it is possible to get adaptations so you can push a pram from a wheelchair, but not in most.
One of the Mum’s Like Us community making it work
There are schools up and down the country that you cannot get in to if you have mobility difficulties.
I have never seen a children’s book in large or giant print. Letters and leaflets and signs are almost always inaccessible to the blind or partially sighted. There are ‘family’ attractions, community spaces and shops without adequate disabled toilets for adult use and that are generally inaccessible. Schools with no dropped curb outside, baby clothes with impossibly fiddly poppers. The list goes on and on.
All these things contribute to making a day in the life of a disabled mum frustrating. It is necessary to be constantly one step ahead, super prepared and think about every eventuality. This can be exhausting.
Inspiring. I do feel, despite the many challenges faced by disabled mums, that we are in a unique position to inspire our children. My children are completely unfazed by my disability. They know mummy has a stick and they know why I use it.
My eldest understands the limitations of my vision. I have answered questions with honesty and drip fed the information I think they need to know as and when it has seemed appropriate. This will I hope encourage them to be empathetic towards, and respectful of the diversity they will encounter in their lives.
I hope they will be proud of me because I am raising them with all I can give whilst shouting about disability and motherhood.
I hope that when they grow up, the stigma around disability and motherhood, and disability more generally, will be gone. As I hope we inspire our children, I also know we inspire one another.
The Mums Like Us community have inspired me enormously. Although I know what it is to be a disabled mother, I do not know what it is to be a disabled single mother, or a disabled same sex parent, or a disabled mother of colour. All the women on MLU have experiences and perspectives that are different from mine. I find their stories so inspiring.
Humbling – Before I had my kids, I was pretty angry. I was angry with my body. It had been such a let down. It had failed me monumentally by crashing out at a young age. I knew I had a lot to be grateful for and that I was very privileged but I still felt the rage!
Since I have carried two healthy pregnancies to full term, the rage is gone. I am still frustrated and daunted of course. And I still get sad sometimes.
But my body has done something amazing. I have to be grateful to it, humbled by it. I have to appreciate it and accept it. Life has given me MS but I will give life my all.

Sally Darby is the founder of Mums Like Usa network for disabled mothers.