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Labels, definitions, and who we are

Posted Sep 28 2011 8:31pm
People-first language is a form of linguistic prescriptivism in English, aiming to avoid perceived and subconscious dehumanization when discussing people with disabilities, as such forming an aspect of disability etiquette. (

Today I was faced with a statement, that not only puzzled me, insulted me, but most of all made me shake my head in disbelief. I was told that I was an insult or disgrace to "disabled" people, and that the way I choose to define myself is part of why people with "invisible" disabilities often are looked down on.

I have been experimenting with making different kinds of bead jewelry lately, and I am in the process of setting up a little store on the Internet where I can sell it. In addition to that, I have also sold some stuff just by people asking me where I got the bracelet I was wearing etc, and I would take orders and custom make a new one. I had promised a lady in the pool that I would bring some in for her to see, as she thought she would like to buy one. A person came to me and told me that when marketing the jewelry I should market it as being made by a disabled person, because "disabled" people never get the credit they deserve.

I found the following definition on Wikipedia
A disability may be physical, cognitive, mental, sensory, emotional, developmental or some combination of these.

Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations.

Thus disability is a complex phenomenon, reflecting an interaction between features of a person’s body and features of the society in which he or she lives.
—World Health Organization

As I stated above, I was insulted by the statement, and for a brief moment, my brain clearly saw the person that I aim to be, so my response was that I saw absolutely no reason why I should market myself as a disabled person. I told her that for the longest time I have been working on figuring out who I am, and I still have a long way to go. I told her that I define myself as Pernille, a person with many abilities, but also with a physical disability. I have no intent to put the "prefix" disabled in front of my name. She then proceeded to tell me who I am, and that by pretending not to be "disabled", I made everyone else look bad.

She told me that by not defining and "promoting" myself as Ms Disabled Pernille, I was in denial and that by "suppressing" my MD, I made other people's issues seem insignificant, because they all know how tough everything is for me. I told her that no one but me knows what is tough, and what isn't. It is tough to need help; it is tough to watch people do things I would like to do but can't. I grieve over the things I have lost, and probably will lose in the future. I grieve over all the broken dreams, sometimes it is tough to get out of bed in the morning because of those things. It is tough to know that there are people out there who see my disability before they see me. But..... despite all the tough things out there, there are many more things that aren't. Going to the pool and exercising isn't tough, listening to her is. Making jewelry isn't tough, it is relaxing. I told her that I am not hiding my MD, it is very visible, and I am very aware of it, but that I have no need or desire to toot my own horn when I do something that has nothing to do with my disability. However, people, if one day I wake up and notice that I can do things I have not been able to, because of my hard work, I will toot it, and trust me, you will know. I work hard on keeping the disease at bay, but why on earth would I define myself by that, when there are so many other things to life that I can do.

How do you define yourselves? How do you define your friends? Are you putting labels on people because you project what you think they are? Do you refer to your "lesbian" friend, your autistic neighbor or the person in a wheelchair as a disabled person? If you do, I want you to stop and think... A lesbian friend is just a friend who happens to be a lesbian, your autistic neighbor is a person with autism, and the person in the wheelchair is a person with a disability.

Let us all watch how we label and see people. Labels are nothing but the feeding ground for pity, stereotypes, wrong assumptions, unnecessary limitations, I bet you could all keep the list going forever.

All I ask is for people to look beyond what they see or don't see, and consider us all for what we are, namely human beings created with different abilities and disabilities. Let us remember and adopt the People First Language as defined by the American Psychological Association style guide, in the opening quote!

I am Pernille, a human being.


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