Over the last few weeks on social media there has been a lot of conversation about the way we talk and represent our children with disabilities. Some I have agreed with and some I haven’t. Yet I have avoided entering into the conversation as its been rather fractious and in all honesty I’m been overwhelmed by just doing life. Yet another message I’ve received today has made me feel like I need to speak up. Because when a point of view or a fear of being wrong stops people from asking for support, stops people reaching out for help, well in my eyes that’s a failing. We cannot educate or make real change in an atmosphere of fear. When the anxiety of being judged stops you from asking questions you are actively stopping progress and development.
Firstly, I want to say that being any kind of parent is hard and I can guarantee that a perfect parent does not exist. Yet for the most of us our children are our world and we wake up each day trying our best to love them and raise them to be decent humans.
Being a parent of a child who has disabilities is all this and more. Beyond typical parenting we often have to become medical experts, voices and advocates for our children.
So secondly, please be kind to yourself, life is a journey of learning. How boring would it be if we all knew everything, though believe me I am beginning to believe that some seem to think that they do.
Thirdly I just want to share my opinion, my own thoughts, maybe not unique to me but honestly it is coming to a point that I do feel that my posts need to have this disclaimer.
Anyhow I’ve had the gift of parenting a child with disabilities in two different decades and I do feel this gives me a perception of change.
When Livvy was born in 1999 disability was still very much a hush hush pity situation. The number of times someone would apologise for my child to me was appalling. You see social media wasn’t a massive thing in my world and actually it was rare to come across an image of anyone with a disability. If it was it was often a portray of limitations for fundraising etc. This made my world small, there wasn’t anyone I could celebrate my child with, in fact I think many would have preferred if I hid her away. No one talked about what she could do always what she could not.
Limitations not achievements.
This simply sucked and this was the reason I actually first started on social media in hope of changing the narrative. My daughter was a beautiful, inspiring, intelligent, amazing girl and I wanted to share and celebrate all her achievements just like I did with her sisters. So that’s what I did and slowly and surely the conversations around Olivia began to change. I stopped the pity party being the narrative of her life. Unfortunately, Livvy passed away when she 9 and a half but when we share memories of who she was they are joy filled, adventure packed, flirting moments of a life that was such a gift, such a blessing.
Still it was hard and it was a struggle and I often felt extremely lonely. I did have to hide the pain, exhaustion to keep the true joy of Livvy. It was rather a one-dimension conversation, I couldn’t risk being open in case the pity party started again.
Fast forward a decade and a bit I am now parenting Daniel in a world where yes discrimination still very much exists but it is definitely not as lonely. I love that my social media is full of children being celebrated for their differences. That disabilities are not being hushed away in a corner hiding, shame filled world anymore. That I can share a photo of a Daniel and my comments received are full of joy and celebration and the ” oh isn’t it a shame” mentality is leaving the framework of acceptance.
Yet what I really love is the community of people who reach out to love and encourage one another. Parenting is hard but fellowship and having a squad of cheerleaders chanting in support makes it a lot easier and a lot less isolating.
So where am I going with all this?
The fact that the world is more inclusive is a fantastic thing, whilst there is a long way to go for full equality believe me, I’ve seen a lot of change in the last decade. Advocating for our children is definitely what we should be doing yes the conversations regarding disabilities should be changing. People are not their syndromes, conditions or abilities. They are their hearts and minds. Yet let’s not allow this desire for equality stop the support that we give one another. Let’s not strive so much for correct terminology that we lose hearts.
The reason I have written this is because over the last few weeks I have been contacted by parents of children with disabilities who are scared to share. One had shared a family photo with a caption that caused her backlash, there was no reason. It was another’s need to educate that distracted from the truth. The photo shared was a family filled with love and laughter. Their children were all together enjoying life, making memories. That one parent is now scared to post again. Her words to me were “it feels like whatever caption I write would be wrong. I need this space to share my life, I accept the comments from people who don’t get it, but now from those who should has made me feel really low”.
Another parent asked me how she should word a post asking for some advice as she had seen others face criticism for what one had said “degrading her child”. Yet the thing is who else can she ask? It wasn’t degrading it was sharing reality in hope of advice.
You see those that live in the disability community we do have a lot to learn but our mess ups are based in inexperience, lack of knowledge and in my case often life fatigue. But we are and always will be our children’s greatest cheerleaders. We love and cherish the very bones of our babies. So, as it all forms of parenting we will screw up, but for the most part it is done with love. If our children are cross or annoyed with us when they are older, we can remind them of this and that as human beings we live to learn and as they mature I hope they realise that parenting isn’t easy and cut us some slack.
Yet as a community we need to be careful, I’m all for progression and I strive for equality for all but let’s not lose what’s special about this world we live in. Let’s love one another, support one another and be a safe place for all those trying their best in a world they wasn’t expecting. My Grandad often said “be the friend you need”.
Let’s be the friend we all need in this wonderful totally unplanned life.