In celebration of Mother’s Day, I encouraged my readers across all my socials to go ahead and ask me any question they have ever had about Motherhood and Disability. At first, I got next to no feedback, but this didn’t surprise me if I’m honest as just like people are naturally curious about how a person may have become a wheelchair user, it conjures the same worries when asking about what it is like having a disability and being a Mother. Such as; “What if I offend or upset them in some way by asking x, y, z?” Thankfully, over the course of the week, people started warming up to the idea that is was, in fact, OK to ask absolutely anything on the topic. I would not have asked if I wasn’t ready for some potentially sensitive questions after all.
In no particular order and with complete anonymity, here are the questions you brought to the table!
Did you always want to be a Mother?
Yes, despite I was born with my muscle wasting condition so have not known life any different, I still had the same common vision of my future like any other little girl. I’d play Mums, Dads and babies and I’d shove the baby doll up my top and pretend to be pregnant, I’d spend hours tending to babies every imaginary whim and people used to comment on how “sad” it was that my parents allowed me to do this and not tell me the “truth”. The truth in their mind was, their assumption that I’d never be able to be a Mother purely because I was disabled.
What’s the most frustrating thing that people assume about your parenting?
That I cannot do anything for my children. This is due to multiple stigmas in society. The stigma that disabled people are helpless and the stigma that society believes if a person is so disabled they need support with activities of daily living (ADLs), they, therefore, cannot possibly look after the needs of a child. The later is not just rife within society in general, but there is a percentage of individuals within the disabled community who believe this too and often this influences their personal decision not to have a family. However, I do see the logical side of this thought process – in fact, I used to believe this pre having kids. Though now I’m a firm believer in we don’t know what we’re truly capable of until we are presented with the challenges head-on and the right support systems in place can make all the difference.
How do you respond to the stigma associated with being a Mother with a physical disability, and how does it make you feel?
Firstly by not taking judgement too personally, though it is difficult at times especially if I’m caught off guard, and reminding myself that stigma derives from ignorance and lack of understanding. Use the opportunity to educate, get them thinking more in-depth on the circumstances disabled parents may face and give them examples of how many of us overcome challenges that others may see as impossible. I’ve found many a time, shining some positivity on the situation and highlighting practical solutions plants the seed to changing peoples perceptions on the topic. Something I try to do on a wider scale via my blog as well.
Despite I try my utmost hardest to challenge the stigma and be upbeat and positive, I have bad days (like any Mum), where I feel everybody must judge me on my decision to have not just 1 but 2 children and feel the stares that bit more, especially in soft play centres etc where my limitations are amplified.
What’s the most positive thing about being a disabled Mum?
Raising children with the first-hand experience of a diverse family dynamic, to be accepting and compassionate of everyone they come across regardless of disability/sexuality/race, beyond the capabilities of other children at a young age (where it becomes engrained) because embracing differences has and will always be what’s normal to my girls. See “5 Things Children Gain Having A Disabled Parent.”
Are carers allowed to help look after your children if you’re unable or must they still solely be your responsibility and your carer just helps?
This answer will be different depending on the Mum’s type of disability. Personally, as I have a physical disability, not intellectual, there’s no difference in comparison to that of an able parent, our children are entirely their Dad and I’s responsibility in every which way. My Personal Assistants are there to help with “Supportive Parenting” only, they are literally my strength that I don’t posses due to the Muscular Dystrophy. They are allowed to lift, fetch things, run after and assist in their basic care where I need help. I am always present, directing and doing all things a Mum does, but they’re there if I’m struggling physically with anything. My PA’s are not permitted to look after the girls without me present as that then becomes babysitting and not something Direct Payments would accommodate, though I am aware of some disabled Mum’s who get extra childcare funding to enable them to rest to be better able to look after their little ones.
How have you coped with Social Services interfering?
With there being no specific protocol/guidelines within Social Services on how to best support parents with disabilities, coping emotionally with Social Services involvement was very difficult. When they were involved, it was very much doing whatever it took to make them see my disability didn’t affect my ability to parent – if I had the right support! Jumping through hoops and being made to undergo a “Parental Assessment” that is designed for parents who abuse/neglect their child (amongst other things), to see if we were fit to keep our eldest at the time was the hardest thing I’ve ever gone through. At one point I had to demonstrate how I’d change a nappy, only 2 days out of ICU, when I hadn’t even tried by myself yet and the hospital environment had no accessibility features to enable me to do it the best way I could. Unlike what I had set up at home… I really don’t know how to answer this question if I’m honest, other than to say I don’t know how we even came through that horrendous time as new disabled parents.
I fought my whole life to become independent. Believing that I could not be an independent Mother played part in me coming to peace that Motherhood just wasn’t for me. Did you face a similar mental battle?
Absolutely, I had thought a million times over the years of all the things I’d need help with and loss of independence I would have if I went ahead and had a baby one day. I always tried to put Motherhood to the back of my mind as Drs had me believe getting pregnant would be next to impossible, and if I did by some miracle – I definitely wouldn’t survive carrying the baby to term. The worries plagued throughout my pregnancy too, it being a surprise pregnancy meant I had to make a swift decision to put my own feelings of loss of independence aside for the sake of the baby. She was number #1 from that point on, not me. Learning a different kind of independence and regaining it but with 2 little beings in tow has definitely been a sub-journey of Motherhood all on its own!
What advice would you give to a new disabled Mum/disabled Mum-to-be?
You will find ways of adapting to the physical challenges of Motherhood, just as you have done everything else in life upto this point. These ways may look a bit odd to outsiders, may be somewhat unconventional but you will find ways that will work for you and your little one.
For the things that do require a helping hand, there IS support out there for disabled parents in the form of Direct Payments and several support groups on Facebook. Before seeking outside help, really develop a solid picture of what exactly you need support with and just how you would like it, because you will need to paint that picture to the people that have the power to put that additional support in place for you.
Lastly, it will get easier as your child grows up. The toddler years are definitely the most challenging, but I could be eating my words when my girls hit their teens 😂! Remember, above all else, believe in yourself, you’ve got this!