Thursday, April 5, 2012

NOAH

When we were first told "your son has Ocular Albinism" I was relieved that it was only in his eyes. Yes, he does have fair skin and fair hair, but it can and probably will get slightly darker, and he will not stand out as much as he would if he had complete Albinism. The first few times someone asked "so it's a form of albinism?" or "so he has albinism" I would correct them with "ONLY in his eyes" because the last thing I wanted was for people to start calling my son an Albino, to me that was such a disrespectful term used to classify and single out people with albinism. I have heard to many times the stories of teasing and bullying because someone was considered weird or an outsider because of their albinism, and I just wanted Liam to be protected from that. (Please understand I am not that judgmental and cruel but so many people are and this is my baby we are talking about...and I am definitely a protective mama bear! I want him to be treated as an equal by his peers not as a "weirdo" or "an outsider".) So, needless to say, I was very hesitant to join NOAH (the National Organization for Albinism and Hypopigmentation) as a member because I feared people would hear this and just jump to a conclusion of "he's an albino" and that was all, and Liam is so much more than that. AGAIN... Please don't misunderstand, I do not have anything against people with albinism but I know and see daily how the world views them and how mean people can be and I guess at first I just really wanted my child to "blend in". But then I came to my senses and realized something, people are cruel, they will assume what they want no matter what and all people no matter how different are beautifully created by God in his own image so who was I to protect Liam from who God made him to be? And who wants to just "blend in" anyway??


My thoughts remain the same on the term "albino"; I believe you should always put the person first not the condition. A person is not summed up by their condition; they are a unique person who happens to have a condition that was not by their choosing so forever I will correct anyone I hear call anyone with any form of albinism an "albino". IT IS NOT ALBINO!! They are people with albinism or a person with albinism, put the person first above all else, not the condition.

Now, that being said, I finally broke down and joined NOAH, and it turns out they have a lot of information that they freely send to parents, with welcome baskets, magazines, informational conferences and brochures year-round. They have people who have been where we are now (the first years of discovering the condition in their own child) and are free day and night to chat with us and lift us up with encouragement along the way. They are an amazing network full of amazing people with tons of advice and stories to share. It was an eye opener.

So, whether your child has a form of albinism, like Ocular Albinism, or has oculocutaneous albinism (complete head to toe albinism affecting the eyes, hair, and skin), the NOAH organization is there for you to help you in whatever phase of the journey you and your family are in. I hope that one day, years down the road; we can be an "on call" family for new families affected by the disease to share our story of hope and support with others. I have attached their link on the left tool bar on this blog and I hope some of you will check it out, even if you don't have a child or know anyone with albinism, it is a great learning site full of wonderful stories and knowledge to broaden your world view and you never know in the future who you will meet or what you will go through. I know I, for one, never thought when I looked at children with albinism that I would ever have a child with the disorder but being on the other side of that fence I can tell you I wouldn't change a single thing.

5 comments:

  1. Your blog is very informative and your son is beautiful.

    However, I disagree with your stance that calling someone albino is disrespectful. It's like saying that calling someone a woman is putting gender before the person, and therefore disrespectful. Or that calling someone a paraplegic is disrespectful. Or deaf...etc. It is a part of who that person is. Not all of who they are, but just like race and gender, it is going to shape that person's life and be something that others immediately identify with them.

    It is wonderful that Liam has such a passionate, caring mother to help him be his best. Good luck to both of you!

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    1. Hello there and thank you for you kind words about my son. I am glad to have any posts that agree or even disagree with my stance on things and welcome more comments like yours. I don’t mind the different views at all. I do as you have guessed, disagree with you. Albino is a term coined to single people out just like the “N” word for African Americans or the word Chink for a Chinese individual. You would not call someone who is mentally retarded a “retard” because that is hurtful; it is not who they are but what happened to or affects them. Conditions do not define who we are. If that were the case many would walk around being segregated or singled out due to their diseases (because it is a disease/disorder just like cancer, cleft lip, spina bifida, metal retardation, etc). If you go to the Noah home page they have a very similar article with a collection of comments from their members with albinism that say the same thing that I posted about. If you wouldn’t say the words above to a member of those races why would you call a person with albinism an Albino? I am sure some members of Noah would disagree and say that it does not necessarily bother them and I hope one day Liam is the same way and it will not bother him but even then, as for me and my house we will teach him that they are people first and their condition as second. Thanks for your comments and I hope we can agree to disagree. Thanks! Amy

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    2. "You would not call someone who is mentally retarded a “retard” because that is hurtful; it is not who they are but what happened to or affects them. Conditions do not define who we are. If that were the case many would walk around being segregated or singled out due to their diseases (because it is a disease/disorder just like cancer, cleft lip, spina bifida, metal retardation, etc)."

      As an autistic person (*not* a person with autism) I disagree.

      I can see claiming that albinism is separate from who you are, but mental conditions like MR or autism are definitely not separate from the person's identity. My autism affects my likes and dislikes, my pattern of interaction with others, my hopes and dreams (and not just in the 'I can't do that because of my disability' sense) - virtually everything that people refer to as personality is affected by autism. It makes no sense to talk about autism as separate from me - if I weren't autistic, I wouldn't be me.

      I also question your assumption of what meaning a disability has to have. Disability, in its essence, simply means having different abilities. What people do to us is *not* what we are, no matter what terms people use for us. Does being called a woman (as opposed to 'person of female gender') mean you have to be relegated to housework and childcare?

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    3. Allow me to clarify my earlier statement…I was simply trying to show that words are hurtful when used to call people names like “retard” or “albino” or the “N” word etc. Simply put, Albinism is a disorder that affects the appearance(along with other things) of a persons skin and just like calling someone names like the above to segregate them I feel this is hurtful and unnecessary. The definition of a disability is the lack of normal ability. It has nothing to do with gender. Being called an albino does however affect how people see them and segregates them apart from equal others just due to their skin and hair color. Unlike your autism which affects your likes and dislikes, albinism does not affect Liam’s likes or dislikes at all. He can still enjoy and like the same thing as any other child without his disability. If he did have albinism he would still be him. Period.

      Per dictionary.com
      dis·a·bil·i·ty   /ˌdɪsəˈbɪlɪti/ Show Spelled[dis-uh-bil-i-tee] Show IPA
      noun, plural dis·a·bil·i·ties for 2.
      1. lack of adequate power, strength, or physical or mental ability; incapacity.
      2. a physical or mental handicap, especially one that prevents a person from living a full, normal life or from holding a gainful job.
      3. anything that disables or puts one at a disadvantage: His mere six-foot height will be a disability in professional basketball.
      4. the state or condition of being disabled.
      5. legal incapacity; legal disqualification.

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  2. Many people, myself included, are often ignorant of how the things we say come across to others. I agree completely with Amy on naming individuals by the person first and then their condition; however, I do understand how difficult it can be to train yourself to address people correctly. To be honest, until I started watching a child with Autism I never realized how important the wording of that phrase actually was. That child is a child first who just happens to have Autism. I have been guilty of addressing him (not to him but to others I speak to about him) as an autistic child. I know it may sound petty, but there is a distinct difference between the two... how they sound and their meaning. I also did not realize that "an Albino" should be addressed as a person with albinism. I learn things everyday and continue to realize things I do or say that should change in order to treat all people equally. Even though I may not completely "understand" the feelings a person with albinism has when they are called an Albino, I do realize that labeling any person is degrading and should be avoided. Thank you for the post... and the explanation!

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