The Choice We Never Made

Today I had the privilege of sitting in a room with 40 of the most incredible, inspirational women on the earth. These women have been assigned the toughest job on the planet and every single one of them has selflessly stepped up to the plate; given everything to a cause which they never imagined they’d be fighting for, alongside dealing with their complete lack of choice in the matter. I’m talking about the amazing ladies I met at the bi-annual Dup15q syndrome conference, people who had their lives turned upside down the day they birthed their beautiful babies into this world. Incredibly fragile, rare little people with a hugely uncommon chromosomal disorder-duplication 15q syndrome. For those of you not hot on genetics, this is a condition whereby the affected individual carries too many copies of a critical chunk on chromosome 15. This tiny internal difference causes a monumental external difference- kids are almost always autistic, have big difficulties in communication (B is still entirely non-verbal at 6 years old), suffer a wide array of seizures, find it tricky to process their sensory environment, deal with various other medical conditions and often present with severe learning difficulties.

These women are more than superheroes. They are 24-7 advocates, therapists, nurses, genetic experts, warriors, fundraisers and system changers to name a few. Oh, and most of them do it sleep deprived and drained, with friend resources depleted along their long hard journey down Reality Road. Disability makes people uncomfortable, especially when that disability is so life defining and all consuming.

Most of my ‘friends’ and even family have gradually and politely distanced themselves from us, finding the impact of B’s issues too hard to handle. They don’t know what to do or how to help, and while it’s very easy to rally round a friend in an acute crisis that has some sort of end point, the exact opposite seems to be true when the situation extends indefinitely, and crisis mode becomes your long term future. I don’t blame them; in all honesty I have no idea of my response if the tables were turned. We live in a short term, throwaway culture where people strive for an easy fix. And if they can’t get that easy fix, they jack it in and start over. This mentality is so damaging to families like mine. Not only does it isolate us, it also questions the very value of our children when acceptability is so closely linked with effectivity. Long term investment with no quick return is not something widely encouraged or practised- it’s hard and draining  and the results are often hard to see. It doesn’t make us feel good.

If we are to see the most vulnerable members of our community thrive and grow, we need to get beyond the fact that this might not make us instantly feel good. You know the phrase ‘It takes a village to raise a child?’ For us, raising B takes everything, and we need the full force of that village onside.

Please, for the sake of all those families facing the demon of disability on a daily basis, learn to do long term. Our view of value and identity has to extend beyond what our kids can give back; we need to see their incredible value and worth purely in who they are-unique and precious individuals who, regardless of ability, are very much worth our effort. Don’t pull back, jump on board. Wade in and help in this thankless task and you’ll learn so much. Families like ours need you. We’re exhausted, depleted, frustrated, disillusioned by the systems supposed to help us and, most prominently of all, isolated. If you don’t know what to do to help ask us. Cook dinner, offer to babysit, encourage us, invite us over (even if it means your easy life is temporarily interrupted) and most of all, love our kids. Not because they can thank you for it, not because it benefits you, but just because. Maybe then we can start to foster a culture of true inclusion, where everyone is welcome, everyone is supported and everyone is loved, regardless of their ability. How you choose to respond can make all the difference to changing the mindset of a generation.

After all, this is a choice we never made.