02. The hat of being a disabled person – part II

A story about emotions and feelings surrounding my disability

With all the medical and scientific parts covered last week, I’ll come to the more human and social aspects of growing up with a disability-hat.

For me having 8.3 fingers and only four toes is a normal state to be with. I mean, I don’t get what you are doing with ten fingers, isn’t that a few too many ;-)?

I have always been very aware about my hands and feet, aware that I look different than most other people and interestingly enough, I felt more at unease with my feet than my hands. I cannot tell you why, but I disliked the fact that my feet were always smaller compared to other kids feet.

When going shoe shopping with my mom, I would deliberately buy larger shoes and then stuff them with kitchen paper to fill out the space that my toes couldn’t reach. I guess that was one way to put up an illusion of normal feet. Even though my feet were also shaped differently, I always call them banana-feet as I find that they are shaped like bananas.

It went so far that I did not want to go to swimming classes in elementary school. We came up with a chlorine-allergy so I didn’t have to go swimming. I also learned swimming very late and when I finally decided to participate in those classes, I would wear socks. Either white ones or skin-colored ones. Yes, I know that this made them look even more different & might have added to potential attention, but somehow that felt better than showing my four toes.

Generally, I did not feel so much shame around my hands and fingers. I also was always the kid that could paint and draw the best. In high school I would sometimes do the art home works of others and my friends “ordered” posters or paintings from me.

You must know, I was born in 1987, I grew up without phones, computers, printers and the internet. So when one of my friends had a postcard of a band cover or something else and they wanted to have it as a bigger poster, they asked me to replicate it on a larger format.

Maybe this made me feel fine with my hands, I dont know. By now, in my mid-thirties I can say that I am not bothered with either my feet or my hands. I walk barefoot, I wear open sandals, no socks, I swim and do whatever I want to do without hiding these parts of my body.

I also have to say that I was fortunate to not really have been bullied in my life. I remember one situation in the school bus, when I entered and a group of three boys I knew and went to school with every day sat there already. They looked at me and one of them spread out his finger and said “E.T calling home”. I felt a bit embarrassed, didn’t say anything and it only happened once. That’s it.

I never felt bullied, I never felt disliked, disrespected or not taken serious or lesser than others. And I went to normal kindergarden, elementary school, highschool, university etc., so I met ‘normal’ people, from all kinds of different cultures, being well aware that bullying happens everywhere, in all kinds of forms and extents, to all kinds of people. Just not to me somehow.

Up until now I cannot explain to you 100% why it did not really occur to me, neither my sister. My feeling is that we both had something in us that made us immune towards it, others didn’t feel the need or wish to attack or bully us about our disability hats.

Maybe it was the effort my mom put into our education and how she raised us. She never made me feel worse or different, she did always ensure me how valuable and worthy I am, I seemed to have gained some kind of deep and basic trust when it came to this aspect of my body.

It would simply not define me, it still doesn’t, until now, even though I am officially 50% disabled. A friend of mine who lost his whole foot in an accident joked with me of being jealous of my 50% as he only had 20% and was much more impaired in his life than I ever would be.

When I was a teenager, I sometimes wondered if I would ever have a boyfriend, if someone else would like or love me with my hands and feet. And surprise, surprise: it turned out that I did have several boyfriends and there was no problem at all. I remember my first boyfriend took some time until he introduced me to his parents, most likely because he didn’t know how they would react. They loved me :-).

There are some things I observed over time, one of them is that children are way more open to ask about my fingers than grown-ups. They are more openly curious and wonder about things that are different. The older they get, I assume the more conditioned they become, the more shy and reserved they are about it. The younger ones openly look, wonder, start moving their own fingers to try to replicate it, sometimes they ask if it hurts, sometimes they just want to touch it and that’s that, moving on. There is no shame in them about their curiosity with regards to another person.

Grown-ups behave differently. I found three categories: those that see my fingers and immediately ask; very, very few fall in this category, honestly, barely anyone.

Then there are those that notice it & immediately look away, feeling clearly ashamed, afterwards trying to avoid the trap of looking again; I often manage to catch these moments because of the irregularity in their movements. Not many fall into this category either because surprisingly: most grown-ups just don’t notice my fingers, third category.

Don’t ask me why, I have no clue about how this works. My theory is that we only see what we know that exist or: I move and behave so normally, I don’t hide my hands, so its just normal for people. Finally, there are those that notice super late after interacting with me, be it working together, doing a hobby or any other situation. I find out further down the line that they were super surprised they didn’t notice before and felt awkward to ask so late. And they realized it doesn’t matter anyways.

It usually is me who opens the topic about it cos it fits the situation, I make a joke or such, and then they might ask: “Yeah, by the way, how come?” The fewest grown-ups ask to touch my hands, so far I only had two doing it. I didn’t mind as it was not intrusive.

I used to get a bit disappointed or upset, especially when my boyfriends didn’t ask me about it. I thought it shows no interest or care, but now I know that’s not true. It has simply never been a big deal for them, no point to ask about it unless it comes up naturally.

However, one boyfriend told me in a conversation, that he spoke with his mom about it, around the topic of children. I was shocked, cos we haven’t discussed it ourselves and they were guessing that surgeries could be an option. Honestly speaking, that was one of the red flags, cos instead of asking me & my experience, he would rather talk with his mom about it, both not knowing anything.

Surgeries are another big topic when being disabled! Yes or no? What type of surgeries? I had my long-term dancing partner asking me once, if I would consider prosthetics. He is a highly intelligent person and I was very surprised about this question, because to me it was pointless. For my hands it wouldn’t make a difference, its not that I am missing an arm or part of my leg, where a prosthetic can do wonders!

Also: the surgery aim for hands like mine should never be to take the standard 10-finger-hand as an ideal goal. It’s impossible to recreate such a complex part of the human body and make them fully functional like a ‘normal’ hand. What is crucial is, to work with what is there and see what and IF something can be improved when it comes to functionality. No unnecessary cosmetical interventions.

There is actually so much more to say about surgeries, I will keep it for another post in the future :-).

Overall, growing up and living with my disability-hat never really had any bigger implications for me. I went through the standard education, I lived abroad and did my PhD abroad as well, I started my own company. I never felt limited in anything I did. I also never felt that I was not taken serious or mistreated as a disabled woman in science.

When working in the lab, I was often even more efficient and handy than my 10-fingered-human fellows, even though I had to stuff in the additional fingers of the lab gloves, so they were not in my way :-D. Somehow I had kind of a normal, standard life, at least if I compare it to people that have been bullied, mistreated and made felt bad because of maybe a bigger nose, their height or their freckles.

Funny enough, I dislike my crooked nose and huge forehead way more than my hands and feet, and I actually really like my differently looking fingers and toes. I think it’s interesting to notice that I get bothered more about aspects of my face than my extremely differently looking limbs. Human psychology, what a mystery ;-)

With this post I hope I opened up a space to freely ask me anything around this topic. I would like that fewer shame and an open curiosity around disabilities exist. While I am aware that non-disabled people will never know how a disabled person reacts, I want to be one of those disabled people that you an come and ask about it :-)

Love,

Daria

Wonderings:

If you also wear a disability-hat, how has it affected you?

Do you maybe know someone with a disability & how was it for you interacting with this person?