Having a brother or sister can be amazing and frustrating in equal measure. But what’s it like if you have a disabled sibling? Do you have an even more special bond? Are there unspoken truths that no one else would understand in the same way? Regular Disability Horizons writer, Raya AlJadir, looks at the things only a disabled sibling would know.
A lot of articles about living with a disability are, quite rightly, written from the disabled person’s perspective, or maybe even sometimes that of their partner or parents. But rarely have I come across a sibling’s view.
I know we’ve all read the odd piece about how a sibling has fought for their disabled brother or sister to be accepted. But again, the focus then is always on the disabled person rather than the non-disabled sibling’s experience and thoughts.
Growing up with three siblings I was not always aware of the impact my disability had on their lives – as a child you would not. But the older I got the more I thought about it.
I recently read the book Wonder, by R. J. Palaci, which is about a 10-year-old boy with facial deformities navigating the world of mainstream school with a disability. A few of its chapters are narrated by the sister, rather than the child himself. It’s a glimpse into her fears, thoughts and the complex love she has towards him.
Being disabled can be tough, but what about the person growing up alongside that disabled person? What of their thoughts and feelings? And what of the special bond that can be born between siblings when one is disabled? What truths do they hold dear that others with non-disabled siblings would never even consider?
Whether you’re disabled or a sibling of someone who is, I suspect you’ll recognise these…
Whether your disabled sibling is older or younger than you, the role of a ‘bodyguard’ is automatically adopted. You have an overwhelming urge to protect and defend them, as though you are their unofficial bodyguard. It is natural, of course, to be protective of your family. But this is multiplied a thousand of times when the member of your family is living with a disability.
This protective nature may become less as you get older and realise that your sibling does not need protection, but simply requires your support.
Constant accessibility awareness
Whether you are out and about with your sibling or not, the issue of access and disabled-friendly environments is always embedded in your thoughts. It is like a radar that automatically goes off whenever you enter a café that has no ramp, or cross a road with particularly high kerbs, or visit a public place that has no hearing loop, or simply notice people’s negative attitudes towards disabled people. Let’s not even get started on how you feel when people use the word ‘spastic’ around you, even when they know you have a disabled sibling!
It is almost like having been educated at a selective school – you have knowledge and an awareness of what it’s like to be disabled that many other people would never even consider.
The inner struggle
So many siblings struggle emotionally with the inner conflict of wanting their parents’ attention in equal measure to their disabled brother or sister, yet knowing that their sibling may need it more at times. They understand that it is not a reflection of the parents’ love, but it’s just that nature of the disability requiring extra care and attention.
I often think back on my own personal experience. My mother would often stay with me in hospitals while my siblings would stay with relatives. I wonder how they felt about that? Did they think mother favoured me over them? Did they feel angry at being left behind? Or did they fully understand that my needs at the time were greater than theirs?
The unspoken rule
As a sibling of a disabled person, there is an unspoken assumption that if your parents are no longer around, then it’s your responsibility to care for your disabled brother or sister, regardless of whether they are older or younger.
I guess this is typical of any family, whether it has a disabled member or not – it is the duty of each member to be there for one another. But I think the difference lies in the fact that for most people, you don’t anticipate it until it actually happens. Whereas if you have a disabled brother and sister, then that thought is always on your mind.
If you have a disabled sibling, you will treat them like any other sibling. You may fight occasionally, tease them and poke fun at them, but also admire and love them unconditionally. You’re likely, in many ways, to lead an ordinary sibling relationship.
But, no matter how ‘normal’ you see your relationship, outsiders will always have something to say about it. They will usually be divided into two groups: the ‘shocked’ and the ‘sympathetic’.
‘Shocked’ people are usually flabbergasted at everything you and your sibling do – from going out to having a laugh – merely because you do it together. They may even be surprised by the fact that you talk to each other without any reservation.
‘Sympathetic cheerleaders’, as I like to call them, will give you a pitying look followed by; “you are a good brother/sister for taking your sibling out.” Believing wholeheartedly that without you your disabled sibling would never go out, staying stuck at home simply waiting for you to be there with them.
By Raya AlJadir