What do people with albinism think?
The Norwegian Association for Albinism represents persons with albinism and their families (7). The Association has approximately 230 members.
In an informal survey on the Association's Facebook page, members were asked whether they preferred albino or albinism. In total, 14 of the 16 who replied felt that the word albino had a negative connotation. For them, the word signals a negative attitude, and can be perceived as a term of abuse in the same way as the N-word. Many find that albino is used in an offensive manner like 'ghoul' or 'vampire', and some people even joke that people with albinism have bathed in chlorine. A number pointed out that a person has albinism – they are not their own diagnosis. The word focuses only on skin colour and not on the person. Many feel that they must refrain from saying albinism, because the majority of people do not know what it is, and only understand what is meant when the word albino is used.
We should take pains not to use a diagnosis or body part as if it were the person. We should not say 'the stroke', 'the appendix' or 'the hip' when referring to patients in hospital (8). In English scientific literature person-first language (or people-first language) is preferred. This means saying 'a person with a disability (or 'a person with a functional impairment'), not a disabled person (9). Some people may regard this as splitting hairs, but it is important for those concerned.
We should take pains not to use a diagnosis or body part as if it were the person
Two of the respondents thought it was acceptable to use albino, and did not feel offended if they were referred to in this way. A number of young adults and adults with albinism have readopted the word albino. They are tired of political correctness and believe that it is people who do not have albinism who are spearheading the battle against the expression albino. Many people use the words interchangeably, provided that albino is only used in its correct meaning and not as a term of abuse.