Important: This is a personal account that may/may not be reflective of other people’s experiences.
There are many times when having a sibling with a disability is hard, life-changing, crippling hard. I feel we don’t speak about this enough. Social media is full of posts of parents celebrating their children’s disabilities, sharing moments of triumph and determination. It is right that they do this, and I know that not every person will deal with a situation in the exact same way.
Many of these posts give hope of what is possible, in many cases giving a platform for the voices of disabled people themselves. It’s worth noting that many of these families seem financially secure with stable homes and established support networks. Perhaps I’m looking in the wrong places, but many of these families also seem to be from empowered white backgrounds (whilst I am also aware that many white families share struggles too). I’m not from that background and perhaps some people will identify with my experiences.
Sometimes as a sibling, you get tired of seeing the jovial social media posts. You can’t identify with these moment of happiness. Disability to you is not a power or a triumph. It’s exhausting. It’s exhausting for several reasons. Maybe because it’s rare that you get a good night’s sleep, especially if you’re in a far from ideal accommodation where you hear every stir, and your disabled sibling happens to have a poor sleep pattern. Your life is unpredictable, and at any moment something dramatic could happen, a meltdown for example, it could be just before bedtime, in the middle of the night, or first thing in the morning.
It could be when you are sharing a proud moment of your own success with your parent who then has to divert their attention elsewhere. You can never be sure that a moment will be just what you had hoped for. Your disabled sibling may and will embarrass you, or be angry with you, sometimes bringing you to tears. Every second of your life has to be planned in advance – it becomes difficult, so difficult that it becomes easier to stay at home.
You can see the exhaustion etched into your parents’ faces, and slowly yet surely, you start becoming a young carer yourself. You become an expert of your siblings’ disability – whilst you watch your friends travel, party and grow into themselves…you then become the person they can’t identify with. You’re now in the ‘other’ category too.
Now, as an adult, I know the name and research interests of every prominent autism expert, I know how to critically read a research paper (undoubtedly this has its advantages)…but I have no long lists of other interests, places I’ve been or things I’ve done. Naturally, my social conversations amongst many people are stunted.
Things change with time. It’s not all awful – and in many ways living with a disabled person opens up your eyes to many related social justice issues. However, I won’t deny that for me at least, life continues to be very hard at times. People will often wonder why you haven’t explored avenues of help available earlier, and why you are singing this miserable song instead of doing that now. I say to these people that if this help is out there, why don’t families like ours know about it?
There are plenty of stories about families pursuing support for disabled people through litigation – even when families know this is possible, it doesn’t stop it being a long-drawn and expensive process – you can’t do it without the time, the energy and the means. There are many things I think about. Who is the disability advocacy movement representing? Is it representing people like my sibling or families like mine? As a minority within a minority, you question every challenge you make to people of authority – will this be used against my disabled sibling? Against my family? You hear the stories of disabled people incarcerated in hospitals through no fault of their own and you think…if that is the price we need to pay for challenging the system, for asking for help, we don’t want the help. You just carry on.
On the rare occasion when there is respite from caring for a disabled sibling, you get glimpses of what it could have been like, how much lighter, how much easier…these are the things you cannot say out loud. There is so much guilt and shaming associated with feeling your feelings. You feel guilty for your parents’ struggle, they feel guilty for yours. You worry about your disabled siblings’ future and also your own life. You can’t plan ahead because you don’t know how to or what you’re planning for. It’s an anxiety-loaded, unpredictable life where everyday you just have to hope for the best.
Having a disabled sibling changed my life in ways I could not have predicted. My love and support for my sibling is unfailing, and I never blame him/her for systems around him/her not adapting to his/her needs, when they can and should. But as a sibling carer, I will say that on many days, I am utterly fed-up or angry or sad or scared. And it’s really ok if you are too.
All names have been changed