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Presidential Address, 2018—Reaffirming Diversity and Inclusion

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Presidential Address, 2018—Reaffirming Diversity and Inclusion INTELLECTUAL AND DEVELOPMENTAL DISABILITIES ÓAAIDD 2018, Vol. 56, No. 6, 486–493 DOI: 10.1352/1934-9556-56.6.486 Presidential Address, 2018—Reaffirming Diversity and Inclusion Elizabeth Perkins, President, 2018–2019 It is an honor to be here today to welcome you to yet come to fruition. However, we can never have the 142nd annual meeting of AAIDD and to discuss the luxury of letting our guard down. Underscoring the conference theme of ‘‘Reaffirming Diversity many of these issues, is the need to reaffirm our and Inclusion.’’ This statement can conjure up commitment to the diversity and inclusion of all many different meanings, hopes, and wishes—and I people, but especially the civil and human rights would like to share my thoughts for how we can and supports of the people for whom we are all here collectively contribute to promoting diversity and today, people with intellectual and developmental inclusion, so that it becomes more of a reality disabilities...our friends, our family. tomorrow than it is today. I am confident that you will find the My Story presentations and posters that you will see during the course of the conference to be informative. But first—Who is this person standing before you? I Hopefully, they will give you new ideas and alert realize as I look around that I see many familiar you to resources that you can utilize in your faces, but many more I do not know. So before I workplace. You will have the opportunity to learn speak directly about diversity and inclusion, please permit me some time to introduce myself. I am a about new research findings, innovative programs, great believer in the power of storytelling. I evidence-based practices, policy considerations, developed a love of musicals from my mother from and new interventions that can be applied across watching American musicals as a youngster. Don’t many domains. The common thread is that they are be alarmed, I shall not be using interpretative all ultimately aimed at improving quality of life. dance, but perhaps you may have heard of a hit And beyond that, if you haven’t already become a Broadway musical called Hamilton? So let me member of the AAIDD family, or this is your first begin ... ‘‘How does an armless, gray-haired, big gay time you’ve attended our conference, we will be nurse, from Kingswinford, a town in Middle England doing everything in our power to convince you it no one’s heard of, by providence, emigrates to Florida, should be the first of many! and shocker, is now a PhD, and a scholar?’’ Yes—I The theme ‘‘Reaffirming Diversity and Inclu- too was born this way, and I was born that way too, sion’’ was chosen in reaction to troubling events, and perhaps that’s enough! As I clearly can’t sing as actions, and divisive rhetoric—leaving many of us well as CHARIS—I’ll spare the rest of the with considerable anxiety. There has also been Hamilton-esque rap. But let me elaborate. as I am justifiable concern that principles and values, and incredibly humbled that you, the AAIDD mem- hard-fought rights and key legislation that directly bership, elected an English gay nurse with a impacts the disability community, have all come disability to serve as the President of this under significant threat, due to fundamental shifts prestigious association that was founded in 1876. in the priorities of federal agencies under the It is certainly not something I ever expected when I current administration. Unfortunately, there are arrived here twenty years ago! several examples—the continuing efforts to dis- So let’s think about expectations and the mantle the Affordable Care Act, or possible power of expectations. When I was born, I was limitations to be introduced to the Americans with quickly whisked away by the nurses, and my mother Disabilities Act, and even proposed funding cuts for didn’t see me for several hours. Eventually, the Developmental Disabilities Act entities such as doctor came on the ward and said, ‘‘Mrs. Perkins State Developmental Disabilities Councils. Unfor- have you seen your daughter yet?’’ After she replied tunately, these are a small sample of many more. that she hadn’t and was obviously worried, the Through effective and persistent advocacy, I doctor quite dismissively informed my mother that, am relieved that some of these challenges have not ‘‘well she has one arm a little shorter than the 486 Reaffirming Diversity and Inclusion INTELLECTUAL AND DEVELOPMENTAL DISABILITIES ÓAAIDD 2018, Vol. 56, No. 6, 486–493 DOI: 10.1352/1934-9556-56.6.486 other,’’ and promptly had me brought to her. My 80’s—not to mention having to contend with the mother upon seeing me, who was already a little 80’s big hair! But seriously, I was certainly not disturbed by the turn of events, was shocked. Her aware of the term ‘‘intersectionality’’ back then expectation from the doctor’s unfortunate and and yet had three marginalized identities, a imprecise choice of words had led her to believe woman, who is gay, and disabled. that I had two arms, with one just a little shorter The brief career counseling I received in high (with a hand, elbow etc.) and certainly not the school had encouraged administrative jobs and that absence of most of it! A few days later, my mother I should register as disabled—playing it safe I was given sage advice from a nurse who told her daresay! So that’s what I did for a while. My father, that everything would be fine, ‘‘just let her find her in seeking a new use for a property he had, that was own way of doing things,’’ she said. And because of currently used as a nightclub and Indian restaurant, that—I grew up to be fiercely independent and did had decided to open a small residential care home not shy away when something challenged me. It for older adults in 1986. I mourned the loss of the was never, no I can’t do that, rather it was, ‘‘well, regular Chicken Tikka Masala, but it opened up a let’s figure this out.’’ new career opportunity I hadn’t considered before. School life was a happy experience for me, It was to become the first registered nursing home both socially and academically. I actually had very in my hometown of Kingswinford. And it still little contact with, or awareness of, other children remains the oldest operating in the area to this day. or adults with disabilities throughout my early My sisters and several of my cousins worked there years. And you may notice that I don’t wear a too...very much a family business, and being part prostheticarm.Ihavealwaysfeltthatthey of a family that became family to others was hindered me more than helped me. But the good something we all strived for. doctors in the National Health System in England I loved being a care assistant, equivalent to would insist on sending me for fittings every couple what we know here as a direct support professional, of years. And, yes, I’d wear them for a couple of and subsequently enjoyed the administration side weeks and then they’d end up in the back of the too, as the company expanded. I was always acutely closet. Actually, I got more use from my prosthetic aware that I was a visitor to the home of people arm as a comedic prop. When my older sisters had that used our services, and the positive daily impact friends over, I’d throw it into the middle of the we could make on their quality of life. My love for room they were in and say ‘‘Can I lend you a my job was so noticeable that the registered nurses I hand?’’—or hide it in the toilet bowl. My sisters, like Queen Victoria, were not amused. I distinctly worked with had, on several occasions, told me that remember a few times when a detached hand would I should do my nurse training. So, wanting to be hurled back at me. The last time I had one fitted pursue further education, the point came when I was when I was eleven, at which point I refused to decided to give it shot. go for any more appointments. I used to get In early 1989, I applied to the local nursing annoyed and think to myself, why are you school for their general nursing course, and I was constantly trying to fix me? I’m not broken...this excited to be called for an interview. That is me! excitement didn’t last, and I felt I was the subject My first recollection of when I truly felt of mere amusement by my interviewer, who shared different, or recognized that others perceived me his concern that it might make him look bad if I as being different, was during the first few months couldn’t complete the training. One of the most of high school. A new self-awareness dawned on bizarre questions he asked was ‘‘Who dresses you me, due to a lot more gawking stares and some on a morning?’’ For sure—I’ve never been a cruel remarks, but as I’ve often found—humor was fashion victim—but I was in no doubt by what my way of ‘‘disarming’’ people; don’t groan! he meant by that remark. A few minutes later I Humor was my way to make other people feel wasmetwiththesameincredulitybythe comfortable. I had also by that time realized that I occupational health nurse, who immediately was gay.
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