Thursday, June 9, 2016

Who Do You Say That I Am?

just watched a story on the news about former Olympian and six-time gold medalist Amy Van Dyken-Rouen, now paralyzed from the waist down after an ATV accident in 2014, who is upset because a lock Dallas hotel employee referred to her as "a cripple."  Cripple is apparently an offensive term.  Interestingly, nowhere in any of the reports that I have read on the incident does she ever say how she prefers to be called.

This argument over how one refers to a person’s “differences” is a hot topic in the albinism community as well.  Many people find being called an albino offensive, preferring rather to be called a “person with albinism.”  For those that prefer the latter, it is the statement that they are a person first and their albinism is of lesser consequence, that they find appealing.  In short they preferred to not be defined solely by their albinism.

Albino is a scientific term defined as “an organism exhibiting deficient pigmentation; especially a human being that  is congenitally deficient  in pigment and usually has a milky translucent skin, while or colorless hair, and eyes with pink or blue iris and deep red pupil."  We'll leave the "colorless hair part of that definition alone since I don't really know what that means.  I am fairly certain that if I put "colorless" in the blank for hair color on my DMV ID or my passport application, it would be rejected!  Colorless as a hair color option may be more appropriate for my bald husband.  If he were to shave his facial hair, his head would be bald, colorless with regard to hair.  FYI, my hair color is listed as "blonde" on all of my government documents.

Back to the original discussion...

I am an albino.  That is a non-negotiable fact.  Am I offended when someone calls me an albino?  No.  It is what it is.  Being called an albino is no different than being called a wife, a mother, a professor, or even a  Like albino, all of those other words describe only a part of who the complete person that I call me.  Yep...I am part  I don't get upset when my girls call me mom, or my husband calls me his wife, or my students call me professor, so why would I get upset because someone calls me an albino?  My albinism is much more obvious than my marital status or my level of education; therefore, it seems perfectly logical to me that that aspect of who I am will be the first thing noticed by a stranger.

And what does "person with albinism" mean anyway?  "A person in the state or condition of being an albino."  Really?  So people prefer to be thought of as a person in the state of being an albino rather than just being thought of as an albino.  The seems to me like splitting those colorless hairs!  If I am going to be referred to as a person "in a state," I want to be in the state of sleep, or happiness, or serious caffeination, or relaxation, or joy, or excitement, or maybe Alaska...not the state of being an albino!  I prefer to be just an albino in some other state/

I actually find being called handicapped or disables much more jarring than being called an albino.  A disability  "places restrictions on an individual' stability to participate in what is considered 'normal' in their everyday society."  Any definition that relies on the word "normal" is problematic from their get-go.  Who is qualified to define normal?  No one that I know.  I can't drive.  Is that abnormal?  No person without a state-issued driver's license can drive.  Does that make all such persons disabled?  I can knit.  I can take photos.  I can write.  I can analyze music.  I can read and write cursive handwriting.  Those are all normal things in my environment.  Does that mean that all persons who can' too those things should be considered disabled?  If we agree that all persons have unique abilities, then I think that we must also agree that all persons have unique "un-abilities," things that we have no inclination or ability to do, but that do not render us "disabled."  My abilities and un-abilities may or may not be related to me being an albino.  Why does it matter one way or the other?

And then there is handicapped..."having a condition that markedly restrict's one's ability to function physically, mentally, or socially."  Socially?  My abilities to function socially may be restricted, but that has nothing to do with me being an albino.  It is to do with the fact that some people just get on my nerves.  That would happen regardless of my pale skin, colorless hair, and eyes with pink or blue iris and deep red pupils.  Perhaps this is due to the part of me.  I may navigate the world differently than those of you who are not albinos, and probably those of you who are too, but I do navigate it...perhaps even more efficiently than some with green or brown eyes and colored hair.  To do things differently should not be what earns me, or anyone else, the label of handicapped.  I prefer to think of myself as a problem solver or creative thinker, not as a handicapped individual.

I am still left with the question of how Amy Van Dyken-Rouer would like the world to recognize the fact that she is confined to a wheelchair.  She find cripple...a person who is unable to use one or more limbs, offensive.  Is paraplegic...a person whose lower limbs are paralyzed due to disease or spinal injury...more acceptable?  Since her devastating incident at the Texas hotel in which she was called "a cripple" occurred while a hotel employee was assisting her to her room, is she comfortable with being called disabled or handicapped?  How are strangers supposed to know what an individual's personal "hot button" may be?

There are always going to be people in the world who say things just to be mean and insulting.  Such persons can call me an albino or a person with albinism and their tone and the context of the words can be equally insulting and painful.  I firmly believe, however, that the majority of people who use a word or description that may be construed as offensive by some, do so unknowingly and unintentionally.  They simply just don't know what to say.  For those of us that are wheelchair bound, or deaf, or blind, or autistic, or albinos ( and our family and friends), the one thing that we can do to help the world grow in understanding, respect, and compassion for us us to use what could be negative circumstances, such as the one in which Amy Van Dyken-Rouen found herself, to educate those with whom our paths cross.  Is this always easy?  No!  Is it always effective?  Most certainly not!  Is it worth the effort to try?  Most certainly, yes!  If we can change the perception of one or two people, that is one or two people who will show compassion towards others and that will lead to a better world for all of us.