Today is December 3rd, 2020, International Day of People with Disabilities. I’m going to start this piece by stating that I do not have a disability and I cannot claim – nor would I – that I know what it is like to have a disability or to live with a disability. Just want to put that on the record. I am the mother of an amazing beautiful severely disabled 13 year old girl so I have that lived experience of living with a disabled person.
As I write this we are in CHI at Crumlin children’s hospital in Dublin, Ireland. Last week my daughter had major spinal surgery to correct severe scoliosis. It’s a long hard procedure with a long recovery but she is doing well. It’s been a lot harder than I ever imagined however. That’s not really what this post is about but it’s just to give a bit of context. As a result of our daughter’s surgery, we have to make some significant changes at home. She is getting a profiling bed and a gantry hoist. These will have to be installed in our living room as it is downstairs. She will no longer be able to access her bedroom upstairs.
We are hoping to have an extension built to provide her with a bedroom, bathroom and sensory/relaxation room that will meet her needs for the rest of her life. Building costs money and, amongst everything else going on in our lives, we are researching ways to pull together the money needed to proceed with the build. That’s once we get planning permission…….
Because of our family’s circumstances (which I’m not going to detail here for reasons that I hope will become apparent as this post continues) we do not have the money to do the build. Just to clarify, this post is not about looking for money. Our daughter is 13 now and has been disabled since birth. She will always be disabled. We will always need an adapted car for her to travel in, she will always need equipment (wheelchair, hoist, possibly a walker etc) to assist her in living her life rather than just existing. None of that stuff is cheap. We accept and understand that. There is one aspect of parenting a severely disabled child and now teenager that has increasingly unsettled me over the last few years but it’s only recently that the thoughts have begun to coalesce in my mind. It’s this: why did it become the norm to turn to crowdfunding and other forms of fundraising in order to provide disabled people with the basics of what they need? Why did it become commonplace to see families having to speak out on very private aspects of their lives to try and get help for their children? Why should any parent have to bare their soul, put their heartache out there for everyone to see in order to fight for their child to have surgery, or to get equipment or to have adaptations done to their house? And perhaps most importantly of all, how have we as a society allowed this to happen? I can only speak to the situation here in Ireland but I’d be willing to bet it’s the same in so many other countries. Irrespective of where in Ireland you might live, I bet you’ve seen many stories in your local media (radio/papers) and on social media about children from your area with disabilities, life changing injuries or life long conditions or serious illnesses who need equipment/vehicles/housing adaptation. I’m sure many of you have generously donated to help. I know that their families are very grateful. Did you ever when reading those stories ask yourself why these families felt they had no other option but to go public? Did you ever feel slightly uncomfortable hearing so much about what should be private business? Here in Ireland we are great at helping others out, at donating a few euros for a good cause, at reading a story in the paper or seeing it on TV and saying to ourselves “ah the poor thing I’ll give them €20 (or whatever)” and maybe feeling like we’ve done a good thing. I’ve done it myself more times than I can count.
But it’s getting worse. I have lost track of the number of Facebook campaigns parents are running in a desperate attempt to get an adapted vehicle or to get their house adapted. I know people personally who have done this and I know the sheer amount of work it has taken. One mum told me that running the crowdfunding campaign and various fundraising events became nearly a full-time job. That’s on top of parenting, running a house and providing 24/7 care to her severely disabled child. How have we gotten to the point where no one seems to ask is this ok?
In our case I have had more people than I can remember suggest to me that I should think about running a crowdfunding campaign to get our extension built. This, it seems, is the new norm. This, it seems, is how disabled children and their families are expected to provide what they need in order to have the best quality of life possible. This, it seems, is becoming the first port of call when it should surely be the last resort.
Surely those families, my family, are entitled NOT to have to tell all about their struggles and sufferings to get what they need. What are we becoming, a society where those who can suffer the most and inspire the most pity get what they need? And maybe other families who for utterly valid reasons cannot speak out like that fall by the wayside.
Are you ok with that?