Brendan Bjorn has missed the last 2 years of school due to being bedridden with pressure sores or because, as is the case since he got out of hospital in December 2018, he doesn’t have the custom moulded wheelchair seat he needs after his spinal fusion in October 2018. In those 2 years of missing school, no one has batted an eye.

“It’s not like he’ll ever go to University, anyway.”

No, he never will. But does that mean my son, or any other child in his position, are less worthy of the time, effort and indeed the financial investment which would see him able to attend school? He is a child who loves going to school and interacting with his peers!

He is being robbed of a basic human right
because he is profoundly disabled and thus considered less worthy.

Brendan Bjorn has not had an in-home respite nurse since June of 2017. In these past 2 years, I have provided 24/7 nursing level care for my son without any break, bar the 15 nights per year provided by the wonderful charity LauraLynn Children’s Hospice. Last year, because of him being in hospital for 2 1/2 months, we only got the chance to avail of about half of those 15 nights.

“If the funding is approved for in home nursing respite, you won’t be able to leave the house due to the Loco Parentis rule.” 

No, that’s not respite. That is still me trapped in our home. That is still my other son trapped in our home. Isn’t Brendan Bjorn worthy of having a parent-carer who is recharged, focused, rested, not so depressed, feels like her own self again, in better shape, happier and healthier? And isn’t Declan worthy of having a life of activities outside of the home in which he can grow as a young boy?

Brendan Bjorn is worthy of having me at my best so that, in turn,
I can provide him with the best care possible.
Exhausted, no parent can provide that type of care 24/7.

I have heard it all over the past 15 years…
Put him in care and get on with your life.
It’s not like he has any quality of life anyway.
Can he even learn anything at school?
School is really just a break for you, it’s not for his benefit.
He’s really just a burden on the taxpayers.
You don’t pay taxes; you only take benefits.
Do mindfulness training and you’ll be grand. 

WE NEED TO HAVE A VERY SERIOUS, RAW, OPEN CONVERSATION IN IRELAND
ABOUT WHO WE SEE AS WORTHY
AND WHO WE SEE AS UNWORTHY…AND WHY.

It has become very clear to me that those with the power to bring about equality, fairness, and the basic human rights deserved for our children with disabilities to thrive, find my son, and those like him, as unworthy. 

Have they said as much? No. But unlike all those comments I’ve heard over the years, some of which I just listed above, the silence from those who do have the power to change his life for the better speaks volumes. But guess what? It speaks volumes about their character, not about my son’s worthiness for a life filled with what he needs, wants, and deserves.

And I won’t be silent, because MY SON IS EQUALLY WORTHY. 

And if you, dear reader, agree that my son – and all of the other children with disabilities whose parents are fighting day in and day out for their basic needs, equal rights, fairness, and the fullest life possible – deserve better, than I ask that you, too, don’t remain silent.