About being severely disabled in this world (and how your fancy PhD title can save you)

Hey everybody,

it has been a long while since I wrote my last post –  I am sorry for letting you down for so long! The last year has been somewhat tough – I had five (5!) operations (I am basically a CYBORG now), I organized a workshop  about Monodominance and I finished *yeahyeahyeah* my thesis. Check out the fabulous cake my sister baked for me when I handed in my thesis:

kuchen2.jpg

I hope things will calm down a bit for this year and so I am planning to write on a more regular basis from now on ^^.

This post is less about science and more about one personal issue which came across me during the last year.

Within the last months I decided to  put my doctoral title into my identification card. This seems insignificant, but it was a huge decision for me! When I started that PhD I was convinced that I did it not for the title but only for the experience, the fun and the opportunity to learn and evolve my personalty.  I even looked down on people signing their letters with “Dr. X”. So why now this change?

As I wrote earlier, it was quite a tough year. I decided to undergo some operations to make my life easier I e.g. got a hearing implant – a Vibrant BoneBridge – to train some hearing abilities on my right side. Basically this is a good thing because I now have better hearing capabilities (not as good as a “normal” ear, but it is still better than being deaf on one side) plus it is somehow cool to be a “cyborg”:

I am a cyborg, thats okay.
I’m a cyborg, that’s okay.

Nevertheless, it took me two operations and long recovering times as the whole thing had to be dug into my skull (ouch!)  – these were long weeks where I could not just go to my BJJ sports club or be otherwise “active”.
Not feeling active/athletic made me think about the game of “physical perfection” and “being healthy” in this society and my role in it.

I am a severely disabled person since my birth (nearly deaf and blind at my right side, a facioplegia on the right side, a not-so-functional right thumb…). . Most of the time I do not think about my physical limitations. The funny part is that I am not really often bothered by my disabilities itself:

I am and always have been an active, athletic person and achieved the things I wanted to. I can perform nearly any activity I want to, including combat sports (like kickboxing etc), playing an instrument etc. I nearly never recognize that I am semi-blind. I nearly never recognize that my right thumb is not working as supposed to do (only if I try to open some doors of old cars (with the “Knöpfchen” which one has to drag upwards to unlock the door from the interior) or when I am playing a piece on the piano which requires difficult accords on the right hand (ok – touché: I consider many accords as difficult that others would probably not ^^). I am into music, despite of being semi-deaf, only in social gatherings, e.g. in a noisy  restaurant where music is playing and everybody is talking, my hearing capacity falls down to nearly zero and I become somewhat useless for talking.

These things I mentioned are not important enough to make my life so much different from that of a “normal” person.

Nevertheless, being read as a disabled person sucks. Not because being a disabled person sucks – it sucks because you encounter people who will judge you from your appearance only.

In my case the (disabled) part of my body which causes most of my troubles does not cause any physical limitations at all: my facioplegia. Why? Because I do not (and never did and never will do) fit into any beauty standards. I will never look like a “normal and healthy” person  (we subconsciously link “symmetry” with “quality of genes” and “beauty”). And: there is no opportunity to hide it – it is written into my face.

In retrospect, during my whole life I had to struggle with people looking into my (not-perfectly symmetric) face and instantaneously putting me into the “mentally retarded drawer”.

One can argue that this just exists in my head (like the thing when someone has a huge pimple and always has to think about how awful that might look while most people do not even recognize it – this even has been proven by experiments!).

However, in my case this is only partially true – it is not a pimple which will eventually go away. I experienced a lot of bullying and regularly received (and still do receive)  confused/pitying/slightly disgusted looks of people which meet me for the first time. It was then my “task” to make these looks change into something more positive by showing them that I am not dumb. Showing them that I am capable of doing and thinking stuff.

In one way this shaped me to be more aspiring and persevering – which is good. On the other hand this wastes A LOT of energy. Why the hell do I always have to prove that I am as worthy as everybody else?

In between the third and the fourth operation (oh god, I nearly feel ashamed by that number!)  last year I learned that energy is limited and that being physically disabled for itself is exhausting enough.

So I decided to skip being a  morally better person by being modest and not showing off with my “fancy” title. (I put “fancy” into quotation marks, because I know that you do not need to be a genius to become a “Dr.”. You just need to be motivated and persevering enough to make it. Furthermore, I know as well that being born as a white person in a upper-middle-class family in Germany which pays you your academic studies and encourages you makes this task a lot simpler…).

For me the key to survival was to live in my own world, becoming interested in learning and certain topics (Nature, programming, music, sports…) to be more by myself and thus less dependent on other people, finding joy and self-esteem by doing things (after the operations I found out that I also have to learn to still love myself when not doing things… but this is another topic). I guess that I never would have started a PhD if I was not disabled.

I worked three-and-a-half years for this PhD and I deserve the *** title. I hope that this title will somehow serve as a shield against everybody (like nasty doctors considering my genes as “unworthy” and so on) considering me as dumb again.

Yours sincerely

Dr. Pia ^^

*) Btw. when I was forced to recover at home I started to knit and crotchet things. Check out these little beasts:

häkeltiere
Crotchet animals and other beasts

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s