My sister has a friend who is disabled (who I’ll call Gertrude for anonymity’s sake). Gertrude’s family almost never includes her in anything because they never bother to check if anything is wheelchair-friendly. They just leave her at home alone for holidays and go off without her, or they take her along with them when they go out and if they encounter stairs they just send her back home and carry on without her. Hearing about the testimony’s of Gertrude made me truly appreciate the type of disability family I have.
The type of disability family that I have is one that treats me the same as all my other siblings and gives me no special treatment. You’d think I’d be able to get away with more things but its actually the opposite – my parents are too familiar with my smart attitude and flimsy white lies to let me get away with anything. It’s just like I’m any other member of the family, I may come with different needs, but other than that I’m the same. A side-effect of this is I feel like we don’t really talk about my disability that much. It’s not like my family’s ever uncomfortable doing so, we just don’t really, definitely not the way I talk about it in this blog.
My family is quick to stand up for me if anyone is mistreating me because of my disability. They have the strength to defend me in ways I’d always be too scared to. I’ll never stop loving my father for telling off a guy at the airport who was staring at me for a good few minutes like I was a freak. People have pointed at me and stared at me so hard that I have cried, but I’ve never had the strength to tell anyone off for doing so. In fact, I’ve noticed that my family seem to get more offended at injustices towards disabled people than I do. I remember multiple occasions where my sister was fuming at an author writing badly about disabled characters in their books or wanting to beat up a woman who was being ableist towards me when, honestly, I didn’t see what was so bad about it myself. I guess it’s just because I’ve grown used to such occurrences.
My family includes me in everything. Whenever we go anywhere, on day trips or holidays, everything is thoroughly checked to make sure it is wheelchair accessible. If the place does turn out to be inaccessible for me or if there’s just one portion of the museum, for example, I can’t go to – my whole family refuses to go there. The type of disability family I have is one that makes me cry at the length that they’ll go to to make me feel included: helping to carry me up the Arc de Triomphe or piggyback riding me up to the top of the Megalithic Temples of Malta. And trust me – when you get to the top, the sight will be that bit more amazing knowing the love and effort your family spent trying to get you there.
But, of course, each of my family members react slightly differently to me and my condition:
My mother helps me out the most now that all three of my sisters have graduated and moved to other countries for university. I guess because of this (and because she’s my mother) she knows the most about what I can and can’t do (but even now I can still surprise her with some of the stuff I can manage to do – but I surprise everyone with that, even myself sometimes) My mother is the person I try to explain certain aspects of what living with my disease can be like to the most, and even though she really tries to understand, she often misses the point and doesn’t. I get it – it’s always hard trying to comprehend a unique perspective like my own.
My father is my wheelchair handyman and helps with downloading extra programs to help me out on my laptop. But, because of his gender, there’s a lot he can’t help me out with (for example helping with washing or help in the toilet) Of course I understand this although sometimes I see Dutch disabled families where the father still helps to shower their disabled daughter and I feel a little envious. It would take a lot of the work off of my mother’s very busy shoulders if my father could help with these things and I honestly don’t mind him seeing me naked, but I do understand why it’s not like that; That’s just not the type of disability family we are.
My father also sometimes doesn’t understand how freeing it feels for me to do the things that my disease does allow me to do by myself. I understand that he’s only trying to help me but sometimes he would be helping me more by allowing me to do things for myself. I’m very proud and feel blessed for the things that I can do without help. My father can also sometimes get agitated when I don’t use appliances that were given to me to make my life easier for the same reason, which makes me hesitant to try new things to help me because I might find that I don’t need it and my father might react negatively.
My eldest sister moved back to England for university and has stayed there ever since. This means that she left right at the time my disease started to progress further, faster; When she left I could walk, but when she came back I was permanently in a wheelchair. I guess that I’ve never really spared much thought to how hard and disorientating that must have been for her. Even nowadays when she visits, I still find myself having to talk through how to help me and trying to explain what I can and can’t do because she hasn’t had much experience with it.
My second eldest sister is the one that treats me most like an adult and has me clearly talk through what I can do with my disease and how she has to help me whenever she visits which I really appreciate her for.
My youngest-eldest sister probably knows my disease as well as, if not better, than my mother. She is also the best at navigating my wheelchair and helping me eat when I need it. When she used to live here she helped me out the most, acting out both the role of carer and of my best friend. I talk more about general issues facing the disability community with her and she’s the most likely member of the family to understand disability movements and activists like Stella Young which my mother and second eldest sister had some trouble swallowing.
I know that I’m blessed for having the accepting, loving family that I have and will forever be grateful for how much they care for me and fight for me to live the same great life as any other teen my age.