by, Renee Wood

In the past I’ve spoken on subjects that I felt knowledgeable about, recently I was given the task of talking about “person first language” vs “identity first language” as it pertains to people labeled “disabled” in society.  It sounds like an easy subject matter that anyone with a disability could tackle – after all we should know how we want people to refer to us, right?  But then I started thinking (not good when Renee starts thinking deep thoughts), what is my “identity”?  In other words, when I stand in front of a group and talk, or just hang out with others, how do I want to be perceived – what is that “Identity” I want them to see me as?  What words would others use, when they really know me as the “person” “Renee”?  When I introduce myself, what words do I use to convey my identity as a human being living on this blue oxygenated planet?  Then I realized this is probably not the topic you want to hear my thoughts on, but if you continue to read, you’ll know my thoughts.

            As I was thinking, it came to me that there are biological traits I was born with that I have no control over such as; skin pigmentation, eye color, fingerprints, the country I was born in, my sexual orientation, the sexual anatomy I was assigned at birth (if my brain doesn’t match what I was born with, I can change it, but until I have an operation to reassign my sexual anatomy, I am stuck with the opposite anatomy of my true identity).  Some people make these biological traits part of their identity, and that’s perfectly acceptable.  I usually attach “woman” after a preceding identifier, such as, “a professional woman” or “a female writer”, I have chosen a biological trait as one part of my identity because it’s truly part of who I am.  However, other biological traits are not always of one’s personal identity, they are just traits others use to describe us, and that’s ok.  But you will never hear me walk in a room and identify as “a straight, white American with brown eyes and brown hair”, because to me these are just traits, it’s not my identity.

Also there are social constructs of identity bestowed on us as our “identity” by society.  For example, if we are a different color of skin, or navigate the world in a different way than what people in society expect, then we are given an identifier that designates us out from the mainstream.  Race and disability are both social constructs to identify and insinuate “difference”, then marginalize those particular individuals, but they are not necessarily one’s personal identity.  If one is fighting for equality, one may use this socially identifying term as a symbol of power, but make no mistake, these are socially constructed identities ascribed to people who meet that criteria. 

Social construct of disability, is much different than a medical diagnosis.  There’s no doubt I have a diagnosis of Cerebral Palsy.  This diagnosis helps me receive the information I need to live a healthy life by avoiding pressure sores, pneumonia, what technology I will need to use, and what supports and services I need to live life.  Since I live with the diagnosis of Cerebral Palsy, society has labeled me “disabled”.  Disability/disabled is not a diagnosis, it’s a label of “a societal constructed identity” that a person, especially a person who visibly functions differently, is supposed to own and identify with, in order to receive society’s accommodations (services and supports) for having different abilities.  On top of that, if one acquires a diagnosis before the age of 22 that is expected to last for life, then that person gets a second social constructed identity of Developmentally Disabled (DD).  DD is not a diagnosis, it only determines the age of onset of diagnosis, which determines where one will receive the supports needed to live their life.  However, this socially identifying label, even separates these individuals from those diagnosed after age 22, even when they have the same functional abilities. 

When I introduce myself, you will never hear me say, “I am a woman with a disability”, or “a disabled woman” or even “an individual who’s part of the DD system”.  It’s conceivable that might say, “I was born with Cerebral Palsy and that’s why I use a power chair”.  When I am writing about the “socially constructed notion” of people who function differently than what society expects, then I have to use the social identifier of “disability’ or else no one would understand what I am talking about (sometimes they don’t anyway).  When I am writing and required to use the social construct of “disability”, I write in person first language because I am a person first, before my chosen identity, or even the identity society assumes for me.  Some people are proud of their identity so choose to put that first as in “we are deaf women”, or “He is a deaf man”, and there’s nothing wrong with that either.  Appropriate etiquette though, when speaking in general, is to use person first language.  However, when speaking about a particular individual, it’s best to find out if they would perfer person first or identity first language.

What specifically is “identity”?  For me it’s something I chose to strive for and create for myself, such as; a professional woman, very well educated, Co-Chair of Olmstead, past chair of DD Council, speaker, author, blogger, an activist, a wife, a stepmom of 2 adult daughters, and an advocate for ALL people.  It’s an internal feeling of what I truly am.  The above are what I want people to see, and use as terms with which to identify me, rather than terms set in society, which were constructed for me because I meet a specific criteria.  To primarily render me as just a “woman with a disability” is quite offensive.  I created a typical life for myself, but I am still, and always will be, identified with the social construct of “disabled”, like a worn-out car in a junk heap, or on the side of the road.  The term “disabled” doesn’t work for many people who function in a different way because many do work.  I do work, and worked hard all my life, and have done as much as, if not, in certain cases, more than a typical person.  Yet, I will never be seen as “typical” or “normal” (admittedly, “typical” is just another social construct of the way in which society believes a person should function physically and mentally) because I need assistance with Activities of Daily Living (ADLs), but everyone does ADLs, I just happen to direct someone to do mine for me, and need help in paying for this service. When I am afforded taxpayer money for this accommodation, I am a typical/normal person, and have always felt that inside.

So am I ashamed of my functionality so much so that I won’t accept the term “disabled”?  No.  I have many good friends who identify as “disabled” and I love hanging out with them, the same as many LGBTQ+ people have straight friends, as well as LGBTQ+ friends.  I have many typical friends as well as those who identify as disabled.  The difference is, although we know some people in a room of strangers, will identify as LGBTQ, we assume people are straight until they identify otherwise.  All my life, since I was very young, even though I was aware that I functioned differently than most, I always felt “normal”/”typical” inside to a degree that’s difficult to explain.  I emulated typical people’s lives because I felt like I identified with them, then the disability identity imposed upon me.  It’s like a “knowing” who you really are – a truth you hide because it’s shameful that you can’t accept who you are, but I can’t deny my truth anymore. 

When I was in my 40’s, my dad testified to my memory of my first day in a school with all students who functioned physically similar to me.  I came home from school that day, I was only 6, but clearly remember the feeling of being mixed up with the wrong group, like a big mistake happened, and I had to tell my parents so they could correct it.  I said, “I don’t belong there”!  My mom inquired to what I was talking about.  I said, “I am not like them”.  I don’t remember anything after that, but my dad said he and mom were confused, and kind of laughed amongst themselves because, obviously, I was “physically”, as well as IQ-wise, exactly like those kids.  What struck me is, my dad remembered that all those years later.  Of course, I wasn’t referring to my physical abilities, I was referring to those I identify with, which were kids who were labeled “typical” or “normal”.  And I always, felt and wrote about, especially when I was young, that I didn’t belong anywhere.  It was, I now realize at 63, that I didn’t have a true identity, but rather one which was contrived for me, but that I never felt quite right about. 

In contemplating this presentation, I got to a point where I asked myself, if I were in a room of strangers, with equal representation of people who navigate the world with some type of visible need of support (what society terms as being “disabled, but the truth is, everyone in the world needs some type of support, but for most people, we can’t see the type of support they utilize), or those who don’t need to show the supports they use (what society terms as “typical”), who would I initially seek out or identify with?  I’m just naturally inclined to gravitate towards the typical.  Why?  Am I dissing people who function like me?  No, and I would probably end up at their table anyway.  It’s just the initial inclination is to gravitate towards what society sees as “typical”, and I think too it’s because my life, in general, looks more like theirs (married, kids, career, own a home/car, with a schedule I set and break), than the majority of people who need supports like me. 

When typical people truly engage with me I feel most in my element.  When I would assume myself into a social gathering of people who were seen as “typical” – I called it “crashing” – I just thought if they didn’t think to invite me, then I’ll just crash it!  But only in my head I was “crashing”. But the truth is, once there, and a conversation started, my functional ability doesn’t matter.  In fact, people naturally accommodate me, “Renee, you want a beer?  Here, let me put it in your holder”.  They recognize that I’m more like them, then not.  It’s funny because when I go to a conference with a good number of people who function like me, and lots of people who don’t function like me, and the conference has an overnight element included, in the evening I find myself engaging in a room of people who are seen as “typical”, and rarely see anyone who functions like myself.  I’m like thinking, “What the hell happened to all the ‘people with disabilities’ after 7:30”?!  One time I went to seek out some who function like myself, I mean who knows, they may have this secret life that they do wild things after 7:30 out of the sight of “typical people”!  But no, I find them in bed, either sleeping or watching tv – not even with each other, which would have at least been interesting, but by themselves.  This is just not me.  I’m sure some typical people do the same thing, but I was the “lone ranger” – ALL those who function like me, were all in bed!

One might rightfully ask, “Well, if you come out as ‘typical’, then you don’t need services anymore, right”?  Nowhere in this blog did I deny that I function differently, and therefore need supports.  I said internally, like an instinct, or just a knowing somehow, that I identify with the social construct of “typical”, rather than the social construct of “disabled”.  Denying services would be like denying a 20 year old, who comes out as a transgendered man, but who hasn’t had reassignment surgery, a sanitary pad!