By Kelly Wilton
If you caught us recently over on our Source Mama Live you would’ve heard the great conversation we had about the things that people continue to say that get under the skin of us special needs mamas. Don’t worry if you missed it because you can watch the replay right here:
https://www.facebook.com/sourcemama/videos/655814548656936
I think many of us can relate to those difficult days when we are so worn out that we feel we can’t face one more insensitive comment; that just one more and we could explode or implode!
I know for me personally I was super-sensitive to a lot of comments in the early days, and even now there are still things that get under my skin. Back then, I would have loved a group like this where I felt heard and seen as a special needs parent instead of struggling to fit in with other groups of parents travelling completely different paths.
The thing that I took away from our Live chat is that, even now in 2020, outdated attitudes towards families in the disability community remain, and these really need to go. Woeful comments from ‘did you cause your child’s disability?’ to unsolicited advice like ‘rein that kid in, he needs a good smack to sort him out!’ are still experienced by many.
I’m part of a generation of parents who are witnessing first-hand the lengths that some people are going to, fighting for inclusion and for mainstream society to accept and show diversity and representation in all communities. It is getting better out there but we still have a long way to go.
But whose fight is it? Should it be the person with disability, the parents of children, our government? In a simplistic answer – it should be ALL of us.
To make a start, here are some ways I think people can be a better ally to a special needs family in the way we’re spoken to about our child’s disability…
Do ask questions but think carefully before you speak: Give it some consideration before a question comes blurting out of your mouth. Remember to be respectful and think about boundaries and how well you know the person you’re speaking to. Are questions of a personal nature really any of your business? Don’t look like a fool by asking something without giving it some real thought. Above all, keep it simple but kind.
Do hold space for us to talk and vent if we need to: Don’t shut us down with a ‘my friend has a kid that has blah blah’ if we open up to you, and please don’t minimise the situation in a misguided attempt to make us feel better. Saying “at least it’s not as bad as….” actually does make it bad and makes us feel like a situation or problem is invalid! Instead, just listen. You have two ears, one mouth, use them wisely to learn something new without assuming you know it already.
Don’t give unsolicited advice: If we haven’t asked for your advice then don’t give it, simple. Many of us have been in this scenario far too many times, and it gets old, real fast. So please, don’t go there unless you’re asked.
Don’t pretend your friend doesn’t have a child with a disability: Often our child’s condition and everything it entails is the biggest thing in our life. It just is. It affects all of us in our immediate family – our relationships with our partners, siblings, family, friends, work relationships, the list goes on. Our world centres around providing the support, structure and love that is needed to support our child in a world that is often quick to dismiss anything that doesn’t fit the norm. Saying things like “He doesn’t look that bad” dismisses all the hard work that goes on behind the scenes that you simply are not privy to. Instead try “I love his/her spirit, his/her willingness, attitude” it shows you are looking a bit more deeply than the standard quick glance and judgement on someone’s life and their ability to live it.
There is so much more we could discuss and this is only the start! There’s no doubt that 2020 has been a challenging and difficult year for all of us. In spite of the incredible differences we all have (which is what makes life so damn interesting after all!), let’s set an intention of being mindful going forward and using our energy and humanity wisely.
