Whilst Ricky Gervais’ controversial introduction to the Golden Globes has been the talk of Tinseltown this week, I also watched one of the glitzy year end of reviews for 2019 that were doing the rounds on social media. It was a review of strong feminist moments of the year.
All were excellent, evoking emotional responses of the most positive kind, but the last in the video was the most powerful. Alex Bornstein receiving an Emmy, gave a speech that I felt was truly empowering (fast forward to the last 60 seconds if you are short on time.)
Alex told the story of her Grandmother, standing in line to be shot into a pit during the Holocaust. Her Grandmother asked a Guard “what happens if I step out of line?” This woman, literally standing at the pit of despair found the strength to do just that. To step out of line.
In doing so, she survived, she made the necessary difference to change the course of the worst time of her life, one of the worst periods in history.
Nothing in recent times has inspired me the way this speech did, as Alex Bornstein encouraged the women of the world to ‘step out of line’. This didn’t empower me just as a woman, but it empowered me as a person who is an advocate for our basic human rights. Rights that are continuously overlooked and abused.
Staying in line is one of the first things we are taught in managing our behaviour, it is the epitome of conformity, that those in ‘charge’ use to keep us all under tight control, so we cannot be a threat to their power.
When I wrote my book ‘Bedtime Stories for Mothers and Others’, I was absolutely terrified that people would judge me for a lot of what I had written. I am very honest and my writing is raw, my mission with the book was to raise awareness of what life can really be like, as we navigate our way through a system, that is stacked against people at their most vulnerable.
My intention was never to make my child seem bad, it is the system that fails to support him that is bad! Patrick, is a beautiful, kind, caring little boy, who has complicated, serious challenges that need very specific support, but he has so much to offer the world, as do all people whose needs are different. Patrick is a scared, confused, little boy with disabilities, and we as his parents are scared and confused too, every minute of every day.
I have felt truly inspired by the number of people who have contacted me to thank and commend me on my honesty in the book, feeling delighted to have a more public voice for what they go through too. This week a brave Irish blogger wrote her truth of living with the challenging behaviours that sometimes come with children with Special Needs and Disabilities. Her voice is being heard around the world.
So much of what I discuss is deemed private, taboo, not for ‘public consumption’. But that is only the case because we allow it to be, because we are scared to ‘step out of line’. This suits ‘the system’ that controls us perfectly, keeping their lack of an effective support system, or sometimes any support system at all, under the radar away from scrutiny or protest.
My family suffers regularly because of the failures of ‘the system’. By the system I mean all of the services that are in place to supposedly offer us support; Our Government, Our Health Service Executive, Our Education System (excluding the school Patrick goes to), Our Department of Child and Family Affairs. Many families feel shackled by the fear of not receiving their services if we dare to speak out, rock the boat or step out of line.
Or they blind us with useless information or excuses, leaving us confused about exactly whose ‘remit’ it is to act on our behalf. Often leaving people, children, to fall between the cracks, tumbling, screaming into the abyss they have created, where no one actually has to take any kind of responsibility. All of them pretending not to see that, if someone doesn’t actually step up and take responsibility, then tragedy will strike.
I have asked our Government Ministers, Service Leaders and many national Journalists, all of whom are paid handsomely for their trouble; “does a child actually have to die before someone does anything?” They never reply to that question, in fact they never reply at all! Maybe they can’t afford the stamp? But then I am sure they could charge it to their astonomical expense accounts, paid for by YOU.
I know I may sound bitter, but I’m not bitter. I’m tired, I’m angry, I’m heartbroken, and I am terrified. Every step of our journey, that started in 2013, has been littered with incidences of service provision that is simply not good enough, often to a dangerous level. I will not bore you with the details (you have to read the book for that), but I could tell you stories that would make your eyes water, stories that regularly make my eyes overflow. Why do our services get away with it? Because we let them, through our silence!
In 2019, I continually contacted Government Ministers, mostly without response. I have sat in HSE buildings 3 times with my sleeping bag and best PJs, refusing to leave without being given services vital to my family. I contact Government Ministers continuously, I have spoken on the Joe Duffy Radio Show to highlight our plight, I even wrote my book because I refuse to stay in any line and wait for the worst to happen.
My complaint to the Office of the Ombudsman for Children, has been pushed aside as it “isn’t within their remit.” It seems their remit is very limited. The lack of effective services and protecting the safety of children experiencing abuse, and enduring serious self harm! Who’s remit is it in then?
My husband will tell you, much to his annoyance, I never stay silent. The video I have shared with you today has made me so sure that, no matter how tired I am, no matter how driven into the ground I become by the bureaucracy and bullshit I face, starting at the top, with our Government, I will in 2020 shout louder than ever.
The survival of my family depends on it.
This week, I have spent many, many hours on the phone and at my laptop, speaking to or attempting to speak to, the Children’s Ombudsman, HSE, Tusla, Dept of Education, Government Ministers, My local TD. Anyone I can think of and I am no further along than when I started on Monday. I don’t know what exactly I have to do to be heard, but I will be heard.
I’ve washed my good M&S knickers and I will pull them on over my pants and go into full Wonderwoman mode, I’ve been practicing the spin for over 40 years. Because this constant abuse of the rights of children with disabilities cannot be accepted by any of us. The decency of an individual and a society has to be defined by the way it treats it’s most vulnerable and right now we are failing.
The world is filled with amazing women, men and people who choose not to identify as either, willing to find the strength to ‘step out of line‘, to tell ‘the system’ that we refuse to accept they are treating us a sub-human, treating us like we do not matter, because WE DO MATTER, EVERY SINGLE ONE OF US.
Whatever way YOU need to, please ‘step out of line’ yourself this year, make it the norm to stand up for your rights and the rights of others, otherwise we will all lose those rights, slowly but surely. Your loudest voice is at the ballot box in the upcoming general election.
On a personal note, If anyone has any suggestions or contacts to assist me in bringing our own challenges to the fore (or just to shout along with me) then, I would really love to hear from you at email@example.com
Right now, inspired by Vera Twomey, top of my list of options is riding my donkey up the middle of the M4 Motorway to Government buildings in Dublin to get media attention on this, even if that means getting arrested, to make our services answer the difficult questions that have dodged for way too long. I’ll just need to lose my Christmas weight first, or poor Shadow the donkey will collapse before I pass county lines!