Hi Joe, I hope my story can help.
One day, my big sister held my hand and we walked to post a letter. On the way there, two boys followed us and held their arms out by their side, mimicking her hunched stance. When we got back she hugged me for about 5 minutes and started crying.
The worse bit about it wasn’t that other people had watched and some had laughed. It wasn’t even that my sister had been the subject of such immature public ridicule. It was that she noticed, and she had wondered why they did it.
For as long as I can remember, I’ve wanted to protect my sister; she’s 4 foot 9, 28 years old and is described by social services as “extremely vulnerable” because she wants to befriend everyone. She plays with Barbies, only wears pink and purple clothing and has been to see Westlife in concert 8 times. When I asked her how she met her then-boyfriend she said she saw him and told him they were going out – quite possibly against his will. So when the boys mocked her right in her face, she was exposed to something outside of this – her world – and something that I didn’t want her to see.
Why did I care about those boys? Because I thought she’d be upset, possibly even afraid in future. Because I thought it was my role to stop this.
But to say this, is to fundamentally underestimate her resilience.
She’s certainly seen worse. Her life has been spent in hospitals, waiting for tests and operations, check ups and scans. Her skin is hyper-sensitive, so even a small injection brought a huge amount of pain, discomfort and fear. Her lungs only work at 30% capacity, her aorta is narrow, she has bronchiectasis, her spine is twisted. She was given 20 years to live, initially.
And what did she say throughout? Well, she was more interested in finding out what time Top Gear was on.
The point is, she can deal with it. All that pain, all those challenges…all that TV. And moreover, I didn’t, really. As a family, it’s deeply disturbing to see someone you love going through all that. But she dealt with it head on, and she made her peace with it. I think that paints an alternative picture of the relationship between someone with a learning disability and someone without one: while we were worrying, she was coping; while we tried to reassure each other, she reassured us. She was much more in control.
To tie all this together, it dawned on me that the incident with the boys was distressing not because it was something I didn’t want her to see – she’s seen a lot worse than that – but because it was something that I, myself, didn’t want to see. Probably because it upset me, much like the hospital incidents did. I found out, years later, that she was hugging me because I was upset, because she was looking after me. It was quite a sobering moment. After all those years of me thinking I was shielding her from things, my big sister was actually facing them directly and protecting me instead. I think it shows a lot more self-awareness and compassion than I’ve ever given her credit for. Moreover, it redressed the balance in our relationship: she assumed the position of looking after me. In fact, she always had done.
So my relationship with my sister is now based on the understanding that she’s my big sister and, in her own way, she has established an authority over me, much as with any sibling arrangement and despite my best efforts to be in control.
That doesn’t preclude me, or my family, from having to take responsibility. She’ll always need us, just as I now realise I need her, but sometimes the practicalities of this statement bring things into a sharper focus. When I was at university my parents both suffered health scares in close succession and I was confronted with the prospect that I was the next in line to ensure her welfare in future. It’s not a nice thought to grapple with and I guess this is where my sibling relationship with her will eventually differ – I will one day move from brother to a more parental role. I’ll always be tied to her in this way; that’s a fact that I’m not entirely comfortable with, more prepared for.
For the time being, though, she’s very much my sibling and, until things change, I’ll always have to accept that she knows best. Because, the thing is, ultimately she didn’t care that those boys mocked her. The next day she was back talking about a new person who she might soon inform is now her boyfriend and, in that same inadvertent way in which she always has, she reminded me that she’s my older sister and she’s the one who looks after me.
I hope this helps, Joe. Stay positive. All the best