Being the parent of a disabled child is an absolute joy, and a total privilege. A child’s purpose is never solely to teach parents, but our son has undoubtedly taught me more than I’ve taught him; about life, privilege, faith, God.. I could go on and on. I’m so proud of him, just as I am of our other son. The things that are hard about parenting a disabled child are not in relation to who he is, but about the world in which we live and how it disables him. (This is why advocacy is such a big part of parenting a disabled child, the world is often inaccessible and it is all too often a fight to get access and support.)
It can be very tough for many reasons, and I think one of them is a lack of understanding. Christians can do community well, but in terms of support for families of disabled children (I can’t speak for disabled adults because I’m not one) I think we struggle.
I have felt inadequate every day since becoming a mum. Not all day, every day, but certainly every day. I think it’s fairly normal, and my friends with children of similar ages chat about feeling the same way. Adding into the chaos is having children who are a different race to me, therefore having lots of experiences I don’t/won’t have, and now having a deaf child who will experience more things I’m not equipped to deal with.
The vulnerability I feel about these pushed me to learn, and I’m thankful to people who have shared their experiences so that I can be a more prepared parent. But I think the church community can go a long way in supporting parents like me. Since our boy’s diagnosis, we have found support from other parents in the same boat, all sailing the disability parenting seas in what feels like a teeny row boat during a thunderstorm. This type of support has been a game-changer, and I’d love to see more of this coming from churches too.
I’ve been thinking about things I wish people understood about families with disabled children. Disability isn’t glamorous (well, it absolutely can be, but in generic terms of how nondisabled people think about it) and it doesn’t tend to make the headlines of the church to-do list. I read somewhere that the highest population of unreached people is the disabled community, and while I’m not sure if that’s actually a researched statistic I can believe it to be at least somewhat true. We love to chat about missions, and I can’t help but wonder how great it would be if we made churches more accessible and could therefore reach out to the disabled community with the good news. One door of entry to this community is families of disabled children.
Our family was all hearing until our littlest came along. I didn’t have any Deaf friends or know much about the Deaf community. This is the case for the majority of d/Deaf children-born into hearing families, and it’s also the same for people with a range of disabilities.
A supportive community makes all the difference for a child to thrive.
Some things I’ve been thinking about are in relation to experiences (good and bad) we’ve had in a variety of churches. There are some things that were really supportive, and things that retrospectively I can see made it more difficult for me. I’m going to share a few things I’d love folk in church to understand:
- We needed support before the point of diagnosis, too. Years of sleepless nights and relentless worry, navigating unknown territory and feeling like a failure came before the actual diagnosis.
- When you pray for our child, please pray that the world will see him the way God sees him- as a valued and treasured child just as he is. Pray that the support he needs will be made available and that he will thrive. (Please don’t think praying for healing is always warranted. It can be very upsetting and offensive!)
- Advocating for your child doesn’t come naturally to everyone, please bear with us as we navigate this. Support us, let us know you’re on our team, encourage us to keep going. Advocacy can be very isolating, and is a massive part of being the parent of a disabled child.
- Disability often makes people uncomfortable, but that doesn’t need to be the case! Disability isn’t a dirty word! Don’t shy away but engage with disabled people and their families.
- Accessibility sometimes means doing things differently to how they’ve been done in the past. Change can be hard, but not being welcomed in the church is harder. Asking people what could make church accessible to them is showing them neighbourly love. It might be that we don’t know what our children need yet, but being asked makes us feel our child is valued and supported (which also makes us feel valued and supported!).
- Be mindful of how the healing miracles are taught. When someone has a poor understanding of disability it often creeps into the way healing miracles are taught, which is both hurtful and potentially damaging to disabled people, and also makes able bodied people miss out on so much depth to Jesus’ miracles and teaching!
Disabled people should feel welcome, loved and valued in church- they are fearfully and wonderfully made too. My mama heart aches for people to understand this.
Kirsten lives in Midlothian with her husband, two sons and dog. She grew up in a Christian home, becoming a Christian in her teens. Her faith developed hugely as she studied psychology then went into working in mental health before having children. Her home is a beautiful mix of Scottish, Nigerian and Deaf culture, and she is currently studying British Sign Language.
