Redefining Disability Challenge – Question 7

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the seventh question in the Challenge. I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later. Here is this week’s question:

Is your work or school life affected by disability? Describe some of these challenges.

Last week I wrote about how my dependence on a publicly funded program for personal care impacts my financial situation and my ability to earn money. To answer this week’s challenge, I will write about my educational experiences as a student with a disability and how my professional choices have been influenced by my disability.

In the United States, all children with disabilities are entitled to receive a free and appropriate education in the least restrictive environment. I was one of the first students with a mobility impairment to attend my small hometown school. My parents advocated for my right to be mainstreamed, rather than receive my education in a self-contained classroom for children with disabilities. I received all of my education in the same classroom as my peers, with the exception of the classes I attended with the other students who were part of the gifted and talented program.

All students with disabilities have Individualized Education Programs (IEP). The IEP is the plan which contains the goals and objectives for a student. Because I had an orthopedic impairment, my IEP had goals related to my physical disability as well as my academic performance. The IEP is developed by the Special Education Committee – professionals involved in the education of students with disabilities.

When I was in eighth grade, my mother began to involve me in my IEP meetings. I read my IEP and the reports from the teachers, school psychologist and physical therapist. I attended some of my IEP meetings in high school where we discussed goals and objectives. Back in the late 1980’s, involving the student in what is now called “transition planning” was a new concept. Thankfully, more and more students are becoming involved in these meetings. My mother’s reasons for including me were simple – it was my plan, my education, and my future so I ought to have a say in the discussions. I remain eternally grateful for her early advocacy to include me in planning for my future.

From the day I started kindergarten at four years of age, I knew my parents expected me to do well in school, graduate, and attend college. There was never a question about my ability to do this.  I remember having a conversation about school with my father just before I stated second grade. He told me, “Denise, you’ll never be able to earn a living doing physical labor, so you have to continue to do well in school. Develop your brain so you can find a job where you can use your intelligence instead of your muscles.” Because my parents and teachers expected me to do well and continue my studies, I expected it for myself. Everything I did in high school was meant to prepare me for further education.

Early in high school, I began to explore colleges and universities. My grades and academic success meant several schools approached me but I was selective in my search. I wanted to attend a small liberal arts college where I would be able to make myself part of a campus community. I did not want to attend a large public university where I would be just a number. I needed to find a school where I would be recognized as Denise, not just another student in the back of a lecture hall. I also needed a small campus which was accessible.

The minute I stepped out of the car in the parking lot at The College of Saint Rose, I knew I had found my next home. At the end of our visit and tour, I told my parents this was the school I was going to attend. They were nervous, and asked how I could be certain when we hadn’t visited any other schools. But I knew St. Rose had everything I wanted. It was accessible, small, academically strong in my chosen course of study, and everyone we met that day had been friendly. I applied for early acceptance, not even considering a plan B in case they didn’t accept me. I was going to St. Rose.

Thankfully, they accepted me because I never did apply to another college before I left for my exchange student year. I started St. Rose excited to throw myself into the college experience. I took full advantage of the state vocational rehabilitation programs which offered assistance for students with disabilities. Book scholarships, tuition assistance, personal care assistance – all helped me fully participate in secondary education. I did not require classroom modifications other than the occasional assistance moving a desk or chair when I had to make a presentation. When it came time for me to complete my student teaching and clinical practicum, the placement office worked with me to locate accessible sites.

I have remained employed full time since completing my graduate degree in 1996. My occupations have always been tied to disability in some way. Disability is my life. My years working as a speech-language pathologist allowed me to help others with disabilities in meaningful ways. When I decided to leave clinical life, I tried cubicle work in an office. But I am too strong of an ESFJ personality to work in a cube farm.

My employment experience is not typical for adults with disabilities. According to the 2012 American Community Survey (the most recent data on their website) only twenty percent of non-institutionalized persons with disabilities aged 21-64 in the United States were employed full time for a full year. The percentage for women aged 21-64 years is even less – fourteen percent.

There are many reasons for the disparities but I am an outlier because those who influenced my education expected me to succeed. I wrote about this last year in a blog post for the US Department of Labor, Office of Disability Employment Disability.Blog. I was empowered by those who did not see my disability as an educational or vocational barrier.

I will continue to work as long as I am physically able. The financial realities I wrote of last week for this challenge limit my ability to accrue assets, making continued employment a necessity. My current job allows me to combine my passion and advocacy with my skills as a communicator. The taxpayers spent too much money getting me educated to have me stop working now after just twenty years! I owe it to them to use that education in an occupation serving others for as long as I can.

Redefining Disability Challenge Question 3, Part 2

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the third question in the Challenge. I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later. I am a licensed professional who worked for nearly ten years in geriatric rehabilitation, so I approached this particular question from both the patient perspective and from my professional perspective. Last week I wrote as a patient; today I share from my experiences as a clinician.

What have your experiences with medical treatment and/or therapy been like? Do you have positive, negative, or mixed feelings about your experiences?

I never thought I would have a job or career in a medical field. When I was younger, I thought I would become a music teacher. I realized I was wrong during my first semester in college and spent the next year trying on various majors for size. When I sat in the first class of “Survey of the Nature of Communication Disorders” with Dr. Gary Jones, I knew instantly I was meant to be a speech-language pathologist (SLP). I was fascinated by words, language and human communication. Working as a SLP meant I could help people, which has always been important and rewarding to me, and be challenged by topics I find intriguing.

I was taught and mentored by some of the finest clinicians and professionals. My professors viewed me as competent, and stood by me when I encountered discrimination during one of my clinical practicum experiences. In classes, I learned about communication disabilities while I was coming to terms with my new identity as a wheelchair user. I was no longer able to walk after my third year of college. There I was, trying to develop skills to help my clients adjust to disability when I had yet to tackle my own feelings related to impairment and a changing body. Sr. Charleen Bloom, a wonderful professor who taught the seminar devoted to counseling skills for SLPs, knew I was holding back and tried to get me to open up to the class but I kept those emotions under lock and key. My studies exposed me to disabilities other than the motor impairments I knew so well, and were my entree into disability pride.

I assumed I would work in a school setting, as is the case for the majority of SLPs in the United States. My first day of student teaching in a public school cured me of that misconception. I worried for a year, uncertain what I would do with my degree, knowing I was not meant to work in a school with children. Then in the summer of 1995 I started my practicum with Joe at a local nursing home and I knew what I was meant to do. I loved the medical aspect of speech therapy! I enjoyed the diagnostic challenges, and felt purpose in my work. I was comfortable in health care settings, not bothered by disability, impairment or death. I spent the first ten years of my professional life working as a per diem SLP in nursing homes and rehabilitation centers. The company I worked for held contracts with several local facilities which gave me the opportunity to learn and work in a variety of settings.

As a professional who just happened to have a disability, I was able to connect with my clients in a way others could not. Often, I was the first peer mentor they encountered as they adjusted to disability. I was able to offer real world advice and experiences to prepare them for the transition home. The social workers did their best, but many families (even those not on my caseload) came to me to ask about services and options for community living.

My personal experiences with health care professionals who did not treat me with autonomy and respect meant I worked diligently to ensure my clients had input into their treatment plans as much as possible. I asked clients and/or family members about their goals, and did my best to design therapy sessions to meet them. I never took clients out of the beauty shop for therapy, and when the weather was nice I brought clients outside. Communication doesn’t happen in isolation, so I took advantage of everyday situations whenever I could.

At least once a week I was accused by someone – either a visitor, new resident or new staff – of being a nursing home resident. I wore a name tag clearly identifying my role, and was professionally dressed, yet for nearly ten years I had to justify my place as a staff member, not a resident. People assumed the wheelchair meant I lived in the institutions. One particularly bad day stands out in my memory. I had visited three facilities over the course of the day, which was stormy and wet. I was finally done with my last evaluation at 6:30 PM. Bundled up against the cold, I pushed my way through the very heavy (not automated) glass doors only to have a staff member come running up behind me and drag me back into the facility. Despite my protests, she was convinced I was a resident trying to “escape.” This was not an isolated event. I would enter staff break rooms to get coffee only to be told by staff who did not even bother to look up at me that residents were not permitted in the break room. I wish I could say I handled these interactions with grace and kindness. Unfortunately, my sarcasm often escaped before I remembered to keep my mouth shut.

I wasn’t the only wheelchair using professional who worked in these facilities. There was a Hospice nurse who also used a wheelchair. For months I wondered why the unit nurses always tried to hand me the Hospice charts. Then one day I was wheeling down the hallway and saw another woman, with dark  hair and glasses, wheeling towards me. We both started to laugh as we approached each other. “You must be Hospice,” I said. “And you must be Speech,” she replied. We decided it had to be the hair and glasses – why else would anyone confuse us?! From that day on, I had an ally and fellow advocate in the workplace. I learned so much from her example.

I left my job as a SLP for many reasons. But I have maintained my professional certification and my license. I worked hard for those credentials, and it is reassuring to know I have marketable skills should I ever need to seek employment. I can never really turn off the “speechie” part of my brain. I analyze accents and speech patterns, observe chewing and swallowing of those around me, and apply compensatory communication strategies in my own life on a daily basis. My disability has helped me focus on communication as the goal of treatment interactions, rather than ‘normal’ speech and language (whatever normal is). I am grateful to have personal experiences to guide me.

30 Days of Thanks Day 8 – Ellen

When I worked in the cube farm, there were very few bright spots in my daily work life. The room was always cold. My cubicles were never situated so I could see the windows. For months we listened to jackhammers as they remodeled the rooms above and next to us. But the people were wonderful – intelligent, witty, caring. They were public radio listeners who understood my “Wait, Wait Don’t Tell Me” references and engaged in morning conversations about “Morning Edition” stories we all listened to driving to work. I made many friends there and they helped make the experience tolerable.

Ellen was one of the first people to introduce herself to me. She was a trainer on the Cultural Competency Training Team and recognized a fellow teacher in me. It didn’t take long before I was a member of the team, learning the curriculum and offering my own insights as a person with a disability. My teammates were committed to reducing health disparities in minority groups and we traveled across New York helping public health workers and community organizations take the first steps on the path to greater acceptance of those often perceived as “different.” We asked questions – often difficult – and challenged ourselves to explore our own cultural biases.

Two years later, the funding for my job was cut. I applied for another job within the cube farm and was fortunate enough to be offered the chance to work directly with Ellen – she was my new boss. Together we designed, implemented and evaluated training related to public health breast, cervical and colorectal cancer screening. We continued to co-train around New York on the Cultural Competency Team. We successfully integrated online learning elements into our training plans even though we were “get people together in a room” trainers at heart.

Working with Ellen I developed skills related to our specific job functions. I learned technical facts about cancer screening. I can explain the science behind cervical cancer screening and why most women don’t need an annual Pap test. I can teach anyone how to complete a take-home fecal occult blood test for colorectal cancer, and demonstrate proper technique using Play-Doh and a potty chair. Really – don’t you wish you got to attend some of our trainings?!

Employees with disabilities sometimes worry about needing to ask for reasonable accommodations. Ellen supported me when my reasonable accommodation requests were challenged by higher management, even if it meant she took the heat. When you rely on others to be your arms and legs, your own ability to work is dependent on staff showing up when they are supposed to. The mother of a daughter with a disability, Ellen “got it” and was a supportive and encouraging boss. She knew I would get the job done even if I had to come in late because a Personal Assistant was sick or tardy. She understood my fluctuating physical abilities and respected my ability to listen to my own body. I had the flexibility to work like crazy on my “good days” and tackle less taxing projects on my “bad energy days.” She never broke the rules, but treated me as a professional and trusted I was competent to deliver good quality work.

After our office was reconfigured, we shared a cubicle wall. I listen to music while I’m working and often hum along without realizing I’m doing it. More than one co-worker has commented on it in the past. Ellen would merely just make a comment about the genre of the day. “Oh – Broadway today?” or “It’s about time you started listening to Christmas music!” She knew when I got my yogurt out of the fridge I’d be opening my Cheez-Its box next. (Don’t ask why I eat that combination – I don’t have a good answer). She shared her chocolate stash and would bring me homemade soup.

It didn’t take long for Ellen to become a kind, compassionate and exceptionally empathetic friend. Ellen was my boss while my family was experiencing our own cancer journey with my sister Mary Jane and her husband. At the same time, Ellen’s father was navigating his own cancer diagnosis and treatment. We leaned on each other as we struggled to be strong for our respective families. Ellen was always first to stop working and say, “Come on – we need to get out of here for a walk.” We would spend our lunch break walking through the neighborhoods near our office, discussing the reality of helping loved ones facing terminal diagnosis. When my sister passed away, Ellen showed up at my house on New Year’s Eve with two quiches because she knew I would be worried about feeding the friends who would be staying with me for the funeral.

Although we no longer work together, we still visit frequently by phone and email and we get together every other month or so. I know she is a reliable listener whenever I need to gauge my own reaction to a question or problem. She encourages me to pursue my writing dreams and congratulates me for milestones along the way. More than once, Ellen has dropped everything to come help me get out of bed or use the toilet when a Personal Assistant has not shown and I can’t find a replacement. I can tell you – a friend who is willing to do that is a keeper!

Thank you Ellen, for always being available for a chat, for a visit, for help or for fun. I appreciate you. Our friendship is the best thing to come from the office building known as Riverview – which has no view of a river.

 

The words "30 days of thanks" in cursive writing on a green square.

30 Days of Thanks Day 1 – My Amazing Personal Assistants

Take a moment and think about your weekday morning routine. It probably starts with the alarm clock interrupting an amazing dream – you know, the one where Hugh Jackman comes to take you to a secluded island in the tropics. Oh, wait – that’s MY morning. Sorry.

After hitting the alarm, you may stretch in bed or maybe you sit and stretch before standing. Some people may make coffee the first order of business, others may go to the bathroom. You shower, perhaps shave, brush your teeth and get dressed.

Now imagine how your morning would be different if you needed assistance from someone else to perform all of those personal care tasks. My morning starts with the alarm clock but rather than getting up out of bed I wait. At 6:00 AM, my Personal Assistant (PA) comes into my house. I listen to her make my coffee – I’ve trained them all so they know not to come into my bedroom first thing in the morning without a cup of coffee in their hand. She turns off my wheelchair charger, moves the chair next to my bed, helps me sit up and hands me my glasses. She helps me transfer from the bed to my wheelchair, then onto the toilet. While I take care of business, she gets my clothes ready and makes the lunch I will take with me to work. When I’m done she helps me back to my wheelchair then into the shower. She washes my hair, hands me my face wash, and helps me scrub my back and feet. When I am done, she helps me dry off and transfers me back into my wheelchair. She puts lotion on my back and lower legs then assists me as I dress. After I’ve brushed my teeth, she helps me dry my hair and makes sure the back looks good before I spray it and leave for work. Most days this takes two and a half hours but I can do it in two if I have to. And that’s just the morning routine.

I have a staff of thirteen wonderful women who serve as my arms and legs – doing everything I am physically unable to do so I am able to live independently in the home of my choice. Without their assistance, I would have no choice but to rely on a medical model of home care, or live in a nursing home or other medical facility. And really, who wants to do that just because they need help going to the bathroom?! I’m not sick. I just can’t move my muscles the way I want. So, I rely on them. They wash my clothes, do my grocery shopping, help me cook my meals, clean my house, water the plants and kill spiders and creepy crawlies. And they do it all with smiles, laughter and happiness.

My primary team – Michelle, Therese, Tina, Candi, and Margaret – and my back ups – Caroline, Sally W, Crystal, Sally B, Stephanie, Sarah, Ronda, and Karen – are dedicated, kind, empathetic, and reliable. They come to work in blizzards, sometimes spending the night to ensure someone will be there in the morning to get me out of bed. They have come to my house at 2:30 AM when I am about to be sick or when I have diarrhea. When I was released from the hospital last year and required an additional twenty hours of assistance each week for six weeks they took on extra shifts to help with my recuperation.

Although they don’t complain to me, I know I am not always an easy person to work for. I am picky about the way I like things done. You probably are too. If you think you aren’t – let someone else put your underwear on you tomorrow morning. You’ll discover how picky you can be! But my PAs accept my direction and follow the routine I have established. They permit me the freedom to live the life I want to live with the knowledge my care needs will be met on a schedule that works for me.

I have been managing my care since 2008. Sarah, Therese and Stephanie have been on my payroll from the start. At this point, all but one member of my team has been employed by me for at least a year. Through my interactions with them and the PAs in my past I have learned how to be a more effective manager, how to offer constructive criticism without malice, how to interview potential job applicants and how to terminate a working relationship.

November is National Home Care Month. It is only fitting that I start this monthly challenge of thankfulness giving praise to the women who work at my house each day so I can live an empowered life. I am grateful to them, and the others who perform this work across our country.

National Disability Employment and Awareness Month

Here in the United States, October is many things. Breast Cancer Awareness Month. Domestic Violence Awareness Month. Down Syndrome Awareness Month. Spina Bifida Awareness Month. Pastors Appreciation Month (in case you are already aware of your pastor and want to do more).

October is also National Disability Employment and Awareness Month (NDEAM). This campaign is held annually to raise awareness of disability employment issues and to celebrate the contributions of workers who have disabilities. The theme for this year is “Expect. Employ. Empower.”

Earlier this year, I wrote a guest blog post for Disability.Blog – the blog of Disability.gov, which is managed by the U.S. Department of Labor’s Office of Disability Employment Policy. In honor of this month, and in case you missed it the first time around, you can find it here:

Great Expectations Guest Blog Post

The statistics related to employment for people with disabilities are sobering. There are many reasons for this, and I will save my thoughts on those reasons for another time. If you are in a position to help someone with a disability fulfill their dream of employment, you have the opportunity to offer empowerment. We all feel better when we feel valued.