Breaking the chain

Last week was a tough one. My eldest was under-the-weather and whiny. My youngest was angry, violent and loud. My husband was overworked and unwell. Benjamin’s health was up and down, as usual. No-one had enough sleep.

We had problems with transport, issues with medication, missed phone calls from professionals, unnecessary arguments, and at times it felt like I would never make it to the course I was due to go on at the weekend.

But did I ask for help? Did I call anyone to let off steam? Did I dare admit it’s been tough? No. These are things I find incredibly difficult.

In my mind, it’s because I voluntarily chose this less-travelled path. Unlike many of my fellow parents of disabled children, who received a diagnosis at birth with that painfully inappropriate “I’m sorry,” or those who faced the agonising months and years of feeling that ‘something was wrong’ before anyone would take them seriously, I had the luxury of choice and preparation. I knew that Benjamin was going to have significant physical disabilities, learning difficulties, developmental delays, and a limited life expectancy. I was offered an opt-out and I refused to take it. So, I’ve brought this all upon myself and my family. I’ve made my own bed and that’s where I must lie. I deserve everything that’s happened to me and I don’t deserve any help.

And because, for all the unborn Benjamins out there, I need to prove I can do this. I have to keep up a façade that everything’s perfect, because anything else would be fuel to the already rampant fire that disabled people and their families are scroungers, burdens, and second-class citizens. That it’s perfectly justified and in no way discriminatory to allow them to be aborted up to birth.

In other words, because I’m proud. People want to help, but I don’t ask and I won’t let them, because I fear their unspoken, “We told you so.”

I shared these feelings with some fellow parent bloggers and found that – while few were in the position of a prenatal diagnosis – many had experienced similar feelings. “I knew the chance of having twins was higher with IVF, so I felt I couldn’t ask for help when they arrived.” “My previous pregnancies were risky, so by deciding to have another child I had only myself to blame if anything went wrong.” “When I fell pregnant for the fourth time my mother told me I should have an abortion … I feel I can’t ask her to look after the kids now because she will think it’s my fault for having another child who now has so many appointments.” “I struggle to ask for help as I feel the need to prove the naysayers wrong.” “Because I wanted him so much, he’s mine; my burden.”

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But, they also pointed out that, “Any pregnancy is risky.” “No-one knows what they’re going to get when they choose to have a child.” “Everyone who has children faces the possibility that their child may need extra help, support, care, or they themselves may need to support due to circumstances outwith their control.” And the wonderfully insightful Alison of Downright Joy simply said, “It takes a community to raise any child and your community are far better off for having your child in their midst… You and your child can give them an incredible opportunity to really value what it is to be human and live in community.”

I need to swallow that pride, don’t I? In being too vain to admit it’s hard, reluctant to ask for help, scared to show the ‘warts and all’ picture, I am also failing to show the beauty that Benjamin brings to our lives. I fought for Benjamin like I have never fought for anything before or since. But what’s the point in fighting for something if you don’t share it? Neither Benjamin nor his sisters belong to me; I don’t have exclusive rights.

How will the prevailing view of disability as something to be cured, shut away, or eliminated, ever change if we don’t give our families, friends, and neighbours the chance to experience disability and neurodiversity as things to be embraced, included, and learnt from? As normal. Families with disabled children need a village, and that village needs them too.

I did, after all, make it to my course this weekend. We were learning about inclusion (more, much more, on this in future posts). We learnt that the first key to inclusion is as simple as a welcome, a greeting. Many of us find it hard to greet disabled people. We don’t know how to say “hallo” in Makaton. We don’t know whether to make eye contact. We can’t look beyond the wheelchair. And such awkwardness stems, itself, from a lack of familiarity, from segregation and exclusion. It’s a self-perpetuating cycle – until we break the chain. By keeping Benjamin to myself, by trying to do it all myself, I’m extending that chain still further.

I want to share this letter written by Parents for Inclusion. I wish I, and my family, had read it before Benjamin was born.

“Dear Little One,

Welcome to the world! We are so glad that you have come. You have a right to be here and belong. You belong to your family, your community, your culture, your country, this world which we share together. How wonderful to have you here.

The people who love you may be feeling sad and scared and will need to cry away their fears. This does not mean they don’t love you and that you are not right for each other.

Like all children coming into this world you need to be loved and valued for who you are including any difficulties you may be facing. You need to be loved, touched, cuddled, smiled at, sung to, talked to, made to feel safe.

As you grow up you need to have fun and laughter, play and music, friends and people who are willing to listen and learn from you. Yes, you may need to have more help and support at times possibly all the time; but remember, the most important thing for you is to be included in ordinary life and for your life – long or short – to be valued. That is not different to any baby in this world.”

Yes, I deserve my beautiful boy … but everyone else deserves a part of him too. It’s time to break the chain.

9 thoughts on “Breaking the chain

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