After the interview with my parents, I had many conversations and it was suggested that I interview my sister, Matilda. As the disabled sibling I’ve always been aware that this affects Matilda but I’m not Matilda so I can never really know and this is why this post is so important. How are non-disabled siblings affected? Is there something needed within occupational therapy practice to support non-disabled siblings?
There are many questions and I’m sure there are will be more as we go along, yet hopefully, we can unpick some questions along the way. So, grab a cuppa…
1. What was it like growing up with a sibling who has a disability?
“Growing up alongside a sister with a disability was normal to me because I didn’t know any better. As I matured, which I reckon was unavoidably forced upon me at a much earlier age as opposed to children with non-disabled siblings (or no siblings for that matter), I came to the realisation that my normality was not in fact the reality of my peers.Matilda
When I was ‘adult’ enough to comprehend my experiences as a child (including my teenage years) and understand the extent that my sister’s disability had upon my own life, I realised perhaps just how much I had missed out on. I often felt lonely or unappreciated growing up as the attention failed to remain on me and sometimes my efforts to care and look after my sister were overlooked. I took on the role of the big sister without hesitation and in all honesty, sometimes I found it very hard. It’s just the small price most children have to pay when growing up with a sibling who has a disability.”
Matilda is younger than me so she has never known anything different and due to the closeness in age she most certainly did take on the role of the big sister. Reading Matilda’s raw reflection is hard because I know it’s true I did get more attention because of my needs and my parents have the same view. This makes me question the support networks outside of the family for Matilda.
2. How has your experience influenced your views of disability?
“I think I am perhaps more knowledgeable about certain disabilities with having a disabled sibling because of the environment I grew up in where it was spoken about openly and often. However, I’d like to think that if I didn’t have a sibling with a disability I would still have an inclusive and welcoming attitude towards the matter regardless.”Matilda
I am immediately drawn to “spoken about openly and often” conversations again how many times do we have to say it. Obviously, disability was always and will always be on the table for my family but coming to think of it, did we ever have an open conversation about disability in school? No. I know actions need to be made to dismantle the ableism in society but if conversations really have this significant impact then why aren’t these conversations more prominent in places such as schools from the get-go?
3. Do you feel like you faced negative stereotypes because of my disability and how did you deal with this?
“A form of negativity I personally experienced in relation to my sibling’s disability was in school. I had multiple incidents, particularly in secondary school, where other students would openly mock my sister in front of me- some being that bad I had to converse with both staff and students about the bullying. I also constantly felt like I was only recognised as being ‘Georgia’s sister’ and never identified as being my own person; moving to a different college significantly helped.”Matilda
Now, I’ll be honest a tear came to my eye reading this response. In school, I never really experienced that many disability-related incidents with peers so to know that my sister did is not right. For my sister to not be known for her own amazing self (not biased much) doesn’t sit well with me. Why did this happen? It’s upsetting to know that my sister has had ableist experiences because of me.
4. Do you think you encountered barriers because of everything we did together?
“I’ve mentioned a few of the barriers faced in answers to the previous questions but I’ll list a few more: not being allowed to do something because my sister couldn’t do it, missing the end of important lessons in school so I could collect my sister earlier to avoid the crowd, sometimes feeling like I was more of a carer to my sister than an actual sibling (sharing a room only emphasised this as I felt unable to escape and spend time on my own) and feelings of exclusion when Georgia was took to appointments and spent more time with our parents than me.”Matilda
Matilda did miss out on a lot because she was stuck to me like glue and we did everything together which I’ll be honest I loved but looking back we did spend a lot of time together. Again it’s not nice knowing that Matilda felt this way, my parents both worked and we did the best we could as a working-class family but the implications of this do weigh and I think it weighs on Matilda the most. Which leads me back to the support networks outside of the family, what needs to be done?
Finally to link it in with the ongoing theme of transitions on NSTP we come to the last question.
5.What hopes do you have for me getting older and what support do you think I will need?
“I wish Georgia a happy and successful life where she needn’t be put at a disadvantage or discriminated against because of her disability. I believe living alone will be a huge challenge for her but something she should work towards, where the family will assist her in any way possible. Georgia will always need support whether that be around the house or simple tasks such as cooking but I think regular visits from either family or a carer would allow her to strive for independence while still receiving the help she needs.”Matilda
Yes, just as I and Mum and Dad thought I will certainly need help during these next steps but I am very lucky that I have an amazing family around me that will help.
This blog has been really interesting and has certainly been an eye-opener. I know that they’re support groups out there for siblings but I certainly feel more needs to be there and that this is a role-emerging area of practice as it is clear that Matilda has faced ableism.
How can we make non-disabled siblings not feel so alone and give them their independence and the occupational justice which they rightly deserve?
A huge thank you to Matilda for being vulnerable with me. The disabled community say “Nothing about us without us” and so should the care community to dismantle these occupational injustices.
Thank you for reading,