Today is International Disability Day. No, I’m not disabled. I can only write from the perspective of caring for my profoundly disabled teenage son, but I will write about disability today because I am his voice.
Not enough is said about the needs of the profoundly disabled. Those children and adults who are fully dependent upon a care giver (usually a family member) to assist with every daily care task there is to be done. I’m talking about those children and adults who are totally incapacitated. This is the sub-group of people with disabilities that I am writing about today. People like my son, Brendan Bjorn.
Generally speaking, profoundly disabled, incapacity children and adults depend on their carer to be their voice in the fight for their rights and needs. So, in my opinion, you cannot have a discussion about disability rights without also including the carers of those with profound disabilities.
I am going to emotionally vomit here, so hang on tight. (I got that phrase, by the way, from a friend of mine who lost her daughter recently to complications of the same condition my own son has. It’s a great phrase.) I could write with a tone of professionalism and articulation that would represent my graduate level education, but I’m not going to do that today. I am going to write from my unfiltered heart today, with all the raw emotion that I feel.
Here comes the emotional vomit.
I’m pissed off. I’m disgusted, angry, hurt and heartbroken. I’m also exhausted and don’t want to be a carer anymore. I just want to be his mother. I want someone else to do the nursing care duties for me. I’m tired of changing nappies, administering medications multiple times a day, hearing alarms going off even when they’re not, lifting when my back says don’t do it…and so much more. I’m tired of being a nurse 24/7. I’m so damn tired.
Go back to me being pissed off, etc. I feel that way because of the feeling of not wanting to care for my beautiful, first born son anymore. Pissed off because if profoundly disabled people like my son had the full, proper supports, services and equipment they required, parents/carers like me wouldn’t be driven to this point of wanting to give up on someone they love more than life itself! Is anyone really f*cking listening?! No.
No one is really listening.
I’m sure I’ll get a few messages saying, “I do hear you, Tracy” but that is where it will end. That’s where it always ends. I’m sorry, but to be blunt, people in my situation don’t want or need platitudes or words. We need action. Nursing help in the home. Respite away from the home. A f*cking overhead hoist system to safely lift my completely incapacitated adult sized son with a spinal fusion in and out of his bed rather than me f*cking lifting him manually on my own! Time off of this 24/7 work saving his life daily while at the same time knowing he has a life-limiting condition and so my work is, to be frank, saving my child who I know will one day die. Hard to read that, isn’t it? Imagine living with it every day.
Do you know how much it weighs on a person’s heart, mind and soul to devote every fiber of their being saving their own child knowing that one day they may very well wake up and discover their child did not wake up? It is horrific! And yet there are no counseling supports provided for parents in my situation in Ireland. What an appalling state of things.
People like my son aren’t valued by the society or the government. If they were, I wouldn’t be writing this piece with such emotional vomit. Instead, I’d be talking about how great it is that I can continue with my career while I know my son is safely being cared for by a nurse at home or how my other son would have a typical social life and be involved in activities outside of just school or how he and I would have the freedom to go anywhere we want pretty much at the drop of a hat because there would be a nurse to care for his brother at home.
We could be “typical” – even if only for those times when nursing help was there to provide care. I’ve not had any in-home nursing respite provided by HSE since summer of 2017. I’m tired.
Talk of inclusion in Ireland at the moment is remiss as well. Another thing that pisses me off. Those organisations who have the loudest voice don’t include the voice of the carers of the most profoundly disabled children and adults in the country. Why? Because people like my son aren’t valued, as I said above. And it is this fact which leaves me heartbroken and disgusted.
It’s not just the government who are guilty of this value judgement and prejudice. It’s the culture and the society, too. And it makes me damn sick because it is that same judgement of unworthiness which translates to a lack of care and support services for the profoundly disabled children and adults, and ultimately for their carers, too.
What can YOU do to fight for the services and support which children and adults with profoundly disabilities need? Ask yourself, please, because carers like me are ready to give up caring.