Let’s just take a breather, everyone
Writing…one of my many pleasures in life. I have only been writing publicly for almost a year.
I was gently encouraged by my husband to start a website and go from there. He and I both thought long and hard about what my website would be about.
I remember the day our eldest son Ethan, was diagnosed with Hunter Syndrome; it forced us to pay attention to words we had never ever given much thought to, simply because they didn’t affect us directly – sadly we are all a little guilty of that, aren’t we?
Words; they are powerful.
“Terminal”, “Progressive”, “Metabolic”, “Genetic”, “Rare”, “Life limiting”
I wrote my first piece and showed it to my husband.
“Imagine how much this could have helped us back in 2008?”. That sentence rang in my ears and so my website was born – It’s me Ethan.
I have no disability. I do not have Hunter Syndrome.
I decided the direction of my website; it was a simple idea really, I would tell ‘stories’ all about Ethan, the odd time I’d add his brothers, my husband and even our extended families.
I would have something meaningful (if only to me) all about Ethan and how he ‘rolls’.
Again my husband encouraged me to share a piece in an Irish site… I was nervous.
Why would people want to read about my life?
What if I offended some?
What if I over-shared?
Then came the voice, you all know the voice…that tiny little one that encourages you, tells you to go for it…and so, I listened to it.
I was a guest blogger, four pieces later and my Facebook page ‘It’s Me Ethan’ was born.
I had a following, I had feedback, I had many messages, comments and I felt connected, they felt connected…it all seemed to be going well.
My confidence grew.
I have since written for a few websites; feedback is a wonderful thing. Some people like the way I write, others not so much and some don’t agree with anything I write… and that is what writers do…they, hopefully start a conversation.
I am part of a private writers group from a website who shares pieces written by the disabled community and by parents rearing children with disabilities and by medical professionals…it seems like the website really have all angles of disability covered.
Over Christmas a disagreement broke out on this private group between the disabled writers and parents of children with disabilities.
It became them and us and even though we are all on the same side; words were indeed the main issue.
Parents were told they were not their child’s voice; that while they do wonderful jobs in advocating on behalf of their child, they are simply not their child’s voice. Each child will grow up, each will reach adulthood, how would you feel if all your trials and tribulations were laid bare for the public to read? Where parents writing appropriately about their child?
The adults with disabilities have a point.
The parents hit back saying that they were indeed their child’s voice at least until their child has their own voice…
And were told no; the adult community are in fact the children’s voice as they live it, they live with disabilities every single day…
Then came a war on words; back and forth; “Ableism” – (which means discrimination in favour of able-bodied people) was used so much that I am pretty sure I dreamt it appeared on Sesame Street!
It boiled down to respect; respect for the child, the adult and the parents…I assure you, respect wasn’t on the forefront of many commenters minds.
I did add a comment. A simple one. Ethan may not reach adulthood and if he does he will be no more than a 6 month old baby in mind and in the level of care he needs – if I am not his voice, who will be?
The answer was; they will be. I was not Ethan’s voice, for Ethan has one! His disability doesn’t affect me.
Coming from my personal perspective, those words cut me, they cut me deep.
The funny thing is I agree with what the disabled writers are saying, no parent should write too much personal stuff about their child – if their child can understand, that child should be included.
I always show J my posts, when they include him, I get their point.
But to tell any parent that they cannot be their child’s voice is not the right way to get a point across – every parent knows they are not their child’s actual voice, they know that their child isn’t sending them messages and that the parent is verbalising it.
Then to suggest themselves to be the voice of all disabled people…well, there is irony there, isn’t there?
Then to dismiss parents of non verbal, terminally ill children and neurological difficulties as all “Inspirational porn” is just hurtful.
When a parent is handed a baby; their world changes.
To say a disability affects only the child is a ridiculous notion and one I just can’t expand on;
Ethan’s disability affects not only our family but every single person who loves him.
I am pretty sure I have not used the ‘deemed’ correct language throughout this post by the disabled writers – I don’t apologise for that, I will call that ‘nitpicking’.
I, along with five other writers created a new space for us– parents trying their best to raise children who happen to have all different types of disability.
SNAP- Special Needs Advocates & Parents – SNAP
Yes, it is for parents and advocates.
Yes, we write about our lives.
Yes, we will learn as we go.
Yes, we will try our very best not to offend anyone.
Yes, we did hear what the talented (and they are) bunch of writers from our group have said.
Yes, we do hope you guys will extend the same courtesy.
We are all advocates…some of us have no choice but to be our child’s voice…some of us do ask our children to read anything before we post…and some of us are just sharing our journey the best way we know how.
We all may have similar paths but when you look a little closer, a little deeper and for a little longer you can see how different we all are.
Respect for all writers and all websites who are trying their best to give a voice to a community for far too long, had no voice.
We, together can change that, and we are…Let’s get back to being on the same page together, each with our own unique point of view…
Yes I cannot know what Ethan is thinking, Ethan is unable to tell me, sometimes I have to guess – no parent wants this life for their child but Ethan wouldn’t be our Ethan without his disabilities.
I have said it plenty of times; Ethan is wonderful and has shown me so much without ever chatting to me. I don’t know anyone else who can say so much without saying it at all.
And I, his mammy, am as much part of him as he is of me.
I will advocate for him, always. I will continue to be my blue eyed, button nosed, chubby cheeked, little boy’s voice.
Writing will always be one of my pleasures in life.
And people will always find offence.
Others will often not agree– and that’s ok.
The Internet is big enough for us all.
An orginal version of this post was published on Fireflyfriends.com and can be found Here
I believe this time the adults with disabilities got the big picture wrong. Yes, many disabled children will grow up and become their own voice, many others will grow up and will still need a personal advocate, others sadly will not grow up and their parents, the people who cared for them 24/7 for whatever number of years they were given will still have a valuable voice for others in the community. As Autism Awareness groups love to tell us, “If you meet one person with autism, you’ve met one person with autism.” That doesn’t make you an authority. This should be common sense for all disabilities; no syndrome, disease or genetic defect causes exactly the same symptoms in everyone. Therefore even an adult who lives with Hunter syndrome cannot say they are better qualified to be Ethan’s voice, they are not. His mother, who has lived everyday of his life by his side, who saw things trained physicians couldn’t see, who knows her boy like she knows her own hand is the only voice truly qualified to speak for Ethan.
Thank you so much Cathy for the support . I see you are on a similar path to mine and we are both on similar pages of a similar book, which no one can ever write… Sending love and light to you and yours X