Proud to be a disabled mum – Nicole Als

Photo of Nicole, an African Caribbean mum with her daughter on her lap.
Nicole and her daughter

“I wouldn’t change a thing about giving birth to my daughter and how she came into the world but I would change the system, how people, how professionals and in particular our government has treated me as a human being.  I was treated as an anomaly, a problem, I would say that we need to really seek to get more respect, compassion, equal rights and support and to be recognised and honoured as disabled mothers.”

“My name is Nic, I’m an African Caribbean disabled mum.  Being a mum, for me, has been the wonderful experience of my life.  I’ve had a disability since I was very young born with chronic illness, it’s always been part of my life.  I had many challenges along the way, personally.  When I finally had a successful pregnancy, I was the most excited I’ve ever been.  My pregnancy went well initially.  As it progressed it became a lot more challenging because of my health needs and it meant that I spent a lot of time in hospital and I realised I needed more support.  I eventually had my daughter in 2011, she decided to come a little bit early and there was a lot of panic around the whole experience. 

She was born with a few complications of her own and taken into the intensive care unit.  Four days after her birth I went into a coma.  The prognosis was that I wasn’t likely to survive and if I did, I would have permanent and severe brain damage.

However, six days later I woke up with an extraordinary amount of memory.  So although I was very excited about it all, everything I had planned had not come into fruition the way I wanted it to.  I got the biggest gift of all, this tiny, beautiful bundle of absolute, pure love.  My daughter.  She changed my life in the most amazing way.  I didn’t get to hold her until she was three months old.  Once I had memory of giving birth, I felt in love with her, I have never felt a love like it.  She became a beacon of light for me particularly in the very dark days of just after having her, because it was a very traumatic experience, for myself and family as such.

However, having her, being that beacon of light, I found a strength that I didn’t think I had, I had experienced so many negative experiences while pregnant with her and then after having her.  She kept me motivated and we’re an amazing pair, she’s nine now.  We do lots of amazing things together, we have travelled and experienced the world we play, sing, dance, we talk, a lot. 

We are a very communicative pair and we enjoy making each other laugh, so I feel really, really lucky that we have had this experience together.  I love my role as mum, my role as mum has been the most important job I’ve had and it will be the most important job I ever have whilst I’m here, because to me there is nothing like it.  I feel lucky to have had the opportunity to experience, not just carrying her but bringing her into the world and see her evolve as an individual, because she’s an amazing person and I’m absolutely in awe of her.

For me what I struggle with and still struggle with today, the fact that as a disabled mum I struggle to get the support I needed.  So, in pregnancy I was desperately seeking some extra support, as to my mobility difference.  I did end up seeking out the Social Services and I had the child protection social worker come to my house to assess me.  Now, I’ve never had dealings with Social Services before, so it was a very shock to my system for anybody to come to my home, with my first child and tell me that I may be a risk to my own child, when all I was seeking was help.

It was a harrowing experience, it left me feeling depleted with a lack of self-confidence and a lack of self‑worth.  I continued to experience professionals in spaces that are supposed to be of care, who mistreated me because of my disability and said the most heinous things I’ve ever heard in my life, to this day. 

That continued after her birth, in part in my recovery, in our recovery, when we were made homeless because [I became a wheelchair user and my Council flat] was no longer accessible and because of that it felt like I was punished, I was causing a problem.  We were causing a problem because I couldn’t just be moved here or there.  That’s how I was actually introduced to WinVisible, a friend mentioned she had sought support from WinVisible, I did the same. 

Having gone through lots of conversations with housing, complaints processes, even going to the housing Ombudsmen, I did all of that.  Then I got to WinVisible and thank you to Claire and Petra [Dando, Camden Association of Street Properties – tenants’ association] I got into temporary accommodation and now almost ten years later I’m in permanent accommodation.  I have extreme trouble understanding why my rights as a disabled mother were denied ‑‑ it wasn’t equal to my non‑disabled friends who had challenges, who were on low incomes.  They got support in a very different way to what I did.  I felt I was punished for not being what other people wanted me to be.  I had an experience, I was told why don’t you just get up out of the wheelchair and this will be easier.  These are the kind of things you hear along the journey.  Then when you feel so exhausted — your mental health has been tested so much that you are exhausted — you are then treated as if you are weak, which is a real experience I had.

So, I feel like, just having the opportunity to just come here and share the story is a really important piece, because throughout the last ten years, especially since having a daughter, becoming a mum, I’ve just felt oppressed, by judgments and stereotypes and labelling and none of it served me, because as far as I was concerned I had survived the biggest trauma I had ever been through, which was being in a coma, and I came out of that expecting people to recognise this.  And my whole physicality changed, I went from using crutches previously and then became a wheelchair‑user.  I just expected that people would see that and understand it and empathise with it and be compassionate.

It was such a shock not to have that because I had assumed that that was my right, to be treated equally, to be treated just as you would treat any other person.

So, basically, I wouldn’t change a thing about giving birth to my daughter and how she came into the world but I would change the system, how people, how professionals and in particular our government has treated me as a human being. 

I was treated as an anomaly, a problem, I would say that we need to really seek to get more respect, compassion, equal rights and support and to be recognised and honoured as disabled mothers.”

Go to our Disabled Mothers’ Rights Campaign page here for more info and to get involved.

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