Glasses, Glasses, Glasses

I started writing a post about glasses a while ago and then abandoned it in my drafts section most likely because I found something else to write about. Well here I am picking it up again and majorly editing it. The time has come that our little Nash has finally received his first pair of glasses. I am not going to lie he looks pretty adorable, that kid is just too cute for me.

It feels like we have had to wait a long time for these glasses. I am flooded with pictures of babies wearing their glasses in my Facebook feed. I kept thinking why are we still waiting? And why does this kid have glasses before Nash? In the end we just had to put our faith in our Ophthalmologist that she knew what she was doing, she is the expert after all.

After our last ophthalmologist appointment we discovered that Nash’s eye glasses prescription was negative 5 and that we could get glasses for him. Now I am negative 4.5, very near-sighted but not as bad as some people I know. If I don’t have my glasses sitting next to me when I take off my contact lenses I can spend the rest of my evening feeling my way around the house to try to find them. I am amazed at how Nash does it, how he gets around, finds things, sees people. I realize until now he never knew the difference so there was no comparison, but still it is incredible.

Today will be day 3 of wearing glasses and so far so good, every now and then he pulls them off but not as much as I had anticipated. I will say this though, I was expecting some big “ah ha” moment from him. That moment never came, I tried to take a shoddy video of him with them on but it didn’t turn out so well and really it wasn’t worth sharing. Nash just looked at me said “mama” and continued on being the little bulldozer that he is. I had anticipated too much, probably from watching too many of those cute videos of babies with albinism trying their glasses on for the first time. Here is such an example, it was just too sweet not to share: Baby’s first pair of glasses.

I have seen some debate recently about whether glasses really help infants with Albinism in those early years. Is it more of a hinderance at this age when a child just wants to rip their glasses off their face? Or does it really help them see better? Until Nash can talk and communicate fully I guess we will never really know how those glasses are working for him, we just hope they make this beautiful world a little clearer.

(The image above is black & white of Nash sitting in his booster seat, wearing his new glasses whilst staring at the camera).

 

The Albino Code

This came through my email this morning and thought it was worth a share: The Albino Code

Dennis Hurley is a man with albinism and in 2006 he released a short movie, The Albino Code, a parody of The DaVinci Code which he wrote and starred in.  He likes to poke fun at the often cliched writing and casting decisions Hollywood makes when it comes to people with albinism or people with disabilities, in general. He has also just released a new sketch called Star Trek: bed, bath and beyond.

Sometimes you just need to have a good laugh.

Is Albino a derogatory word.

The word Albino is it a derogatory word or just another label among the masses of labels we accumulate as human beings? The word is thought to come from the Latin, albus, meaning white. It also means blank, as in devoid of color or features. Bill Sherk author of the 500 Years of New Words, states the word Albino was thought to have been first used in English in 1777 in William Robertson’s book “The history of America”. Robertson refers to native Africans as Albino who had white skin instead of black. 

Categorical labeling is a tool we humans have used for centuries to resolve the impossible complexities of the environment we have trouble understanding. Labeling can be good as it can tell us who is friend or foe, what is safe or dangerous. However, it can be harmful when applying these labels to other human beings especially when referring to race, color, intelligence and disability.

Sometimes I feel the world around us has become so politically correct and I am not sure whether that is a good or bad thing. We spend so much time wondering if we might offend it is hard to know what to say. Living in Scotland I found political correctness wasn’t so abundant compared to here in North America. Maybe the Scots are just more open and honest and unafraid to offend or maybe I have no idea what I am talking about (a very plausible possibility). I do know that now I have a child with a disability that I am more aware of these labels, though the word Albino does not bother me per say it may bother Nash one day. I also don’t want to categorise him as one thing, after all he is a human being like anyone else with all the possibilities of the world at his feet. If we label someone as Albino do we constantly reinforce the disability that surrounds this condition instead of accepting them as they are?

The National Organization for Albinism and Hypopigmentation also acknowledges that there isn’t a clear consensus on the use of the word Albino.

It states:

In the albinism community, opinions vary on the use of the word ‘albino.’ While some find it to be an extraordinarily offensive term, others feel the label carries neutral or even empowering connotations…Some people with albinism grew up in families or communities that used the word ‘albino’ often and learned at an early age that there was no shame or negativity in referring to themselves as such.

But the site goes on to say that when in doubt, it’s best to play it safe: “To most in the albinism community, the term ‘person with albinism’ will always be a kinder, gentler, less shocking term.”

It seems negative attitudes and uncomfortable behaviour towards disability comes from mainstream media, it does nothing to portray and prioritize accurate views of people with disabilities. Recently I saw a post about a radio station The Breakfast Club on 105.1 that posed the question “Where do Albinos go after school?”. I seriously had to go online and look this radio station up and listen to the segment, it was as ridiculous as it sounded. A perfect example of how the media does little to educate or inform the general public.

I will say if you don’t know how to interact with someone with a disability for fear of offending them below are a few tips that might help:

  • emphasize the people, not the labels.
  • don’t refer to people by a disease or disorder, this way you are not focusing on the particular functional limitation but on the individual themselves
  • remember that having a disability does not equal suffering
  • try not to be too paranoid about your language, a person or group of people will generally let you know if they are offended.
  • never assume everyone within a group are the same, each person with a disability is themselves an individual just like you and I.

I don’t really know if I figured out the answer to my question but at the very least we can agree that it is better to play it safe.