Moving Day

When I moved into my apartment, I never imagined I would still be here twenty years later. It was August 1996, and my roommate Stacey and I were excited to start out in our first ‘adult’ apartment. Together we shopped for housewares and established a place where we felt at home.

Stacey moved in and out for the next few years as she progressed through graduate school and the start of her career. When she moved into a place of her own, I first began to think about moving as well.

Life has a funny way of throwing curve balls into our plans. Over the next ten years each time I seriously thought about moving, something happened to prevent it. The end of a serious relationship, a car crash, an injury – many things kept me here.

One of the reasons I stayed was I simply couldn’t find anywhere better for the same cost or less. Affordable accessible housing is extremely difficult to find. Sure, I found many nice places. But as a single woman who must abide by income restrictions in order to be able to receive home care, I could not afford a fully accessible luxury apartment. The places I could afford were not any better in terms of accessibility, and did not solve a major problem – transportation.

Our local paratransit service, which provides transportation to disabled people unable to access the fixed bus route, only operates within .75 miles of a fixed bus route. My apartment is 2.2 miles off the bus route. When I was able to independently drive my van, this was not an issue. Now that I cannot independently drive my van, this is a barrier.

In order to maintain employment and independence, I have to move closer to the bus route. In order to save money for a new van, I must move to a place that is less expensive so I can hopefully save a bit of money for a downpayment on a new vehicle.

Today I am starting the move out of my apartment. Thankfully, my new place is not far away. I will be renting some rooms from a friend who lives down in town. My ZIP code will stay the same, I can keep the same phone number, I can still use my library card. Even more important, my new place is close enough to my current apartment so I do not need to hire a new crew of Personal Assistants.

For the past two months, I have been sorting through my possessions. While I still have some things to toss, my life (minus my bedroom furniture and my computer) is contained in these boxes and bags stacked in my living room.Boxes and bags stacked in rows in an apartment living room.

It is amazing what you find when you start the packing process. Cards from my mother, photos from college and Australia, letters from friends and family, and old research papers have made me laugh and cry – sometimes simultaneously. A few items have been placed in a “keepsakes” box because I know I want to save them, but I don’t have time to go through things right now.

Some finds may well be antiques now. My old Walkman and Discman seem to be in good shape. My mini-cassette recorder, record cleaner and typewriter eraser brought great laughter. The PA who was assisting me had never seen a mini-cassette recorder and did not know what a typewriter eraser was. When did I become an adult with “outdated” possessions? How did that happen?

Thanks to dedicated friends and family, the majority of my possessions are now in my new place. We completed the move before the rain came. All that is left is to unpack and store everything. I did not supervise all the packing, so I imagine there will be some fun surprises.

Although, it will take something very neat to top the Walkman and mini-cassette recorder!

Why I Have Not Written About Japan

On July 26, a day when I should have been celebrating the anniversary of the Americans with Disabilities Act, I was attempting to process the news of an unimaginable hate crime. Instead of gathering with my disabled peers in joy, I was sobbing as I imagined what the victims had experienced during and after the massacre in Sagamihara, Japan.

You haven’t heard about the massacre? I would bet you aren’t the only one.

Around 2:20 AM, a former employee of a residential facility for the disabled in Sagamihara committed the largest mass killing in Japan since World War II. He broke into the building, tied up the staff members, and stabbed the disabled residents, killing 19 and injuring 26. The victims ranged in age from 18 to 70, both male and female. Most were stabbed in the neck. throat, and chest as they slept in their beds.

I waited for the “mainstream media” to cover the story. After all, hate crimes and terrorist acts have been receiving a great deal of attention. Nice, Brussels, Orlando, Paris, Munich – I’m guessing you recognize recent stories related to these places.

Instead, I read stories like this Japan Times article which described the crime as a “mercy killing.” According to the article, the killer believed he was providing mercy to the victims’ caregivers because “it would be better if the disabled disappeared.”

There was no mass outcry of horror and disbelief. There were no large expressions of sympathy and solidarity.

Then, slowly the messages began to come from the worldwide disability community as they wrote social media updates, blog posts and essays. Reading them, I was grateful for these brave writers who took the time to capture the loss, rage, sadness and fear so many of us felt. I was able to share their work when I lacked the energy and stamina to compose my own response to this terrible act.

I tried to write. I attempted to find words to express my emotional response. If ever there was a time when I needed to add my voice to help draw attention to an event, this was it. But whenever I tried, I got stuck in the same mental prison.

Those nameless victims? They were me. If I had been a resident in that facility, I would have been one of those who went to sleep one night in July only to have my throat slashed while trapped in my bed, unable to escape injury or death.

The victims’ only crime – my only crime? Being born disabled. Less than. A burden. Incompetent.

Murders of disabled people are incorrectly called “mercy killings” by media outlets because of the ableist belief that disabled lives are so invaluable or unbearable that our murders are acts of mercy. Don’t believe me? Remember Tania Clarence – the mother who killed her three disabled children and was only charged with manslaughter? I wrote about the case in this post. How about the mother who received a charge of involuntary manslaughter for VOLUNTARILY poisoning her disabled daughter and killing her? If the victims of these crimes had not been disabled, would the charges have been more severe?

Writing about the massacre has also been difficult because my own personal care situation has been strained for the past month. Last summer – almost exactly a year ago – I wrote about how life is different when personal needs are met. Just this past month, I have had two Personal Assistants (PAs) out of work for hospitalizations; one out due to a broken foot; one out due to complications with her pregnancy; and one out due to a family emergency. These are legitimate reasons to be absent from work. But my need to use the toilet, get dressed, eat, get in and out of bed, work, live – insert action of your choice here – does not stop just because I do not have my regular staff available to work for me. Yes, I have other staff but they are not always available to work at a moment’s notice. If it were not for the support and assistance from family and friends, I would have no choice but to rely on institutional care like my disabled peers in Japan.

Facing a crisis in personal care, knowing that I would be institutionalized without the generosity and kindness of a support network I have carefully cultivated, and reading about the murder of innocent disabled people in a setting where they should have been safe – well, writing has not been a priority in my life. It is a shame, because I need the therapeutic outlet of writing even more when I am stressed and emotional.

I really need to write. I am a writer – and writers need to write.

So, I set a goal to post something – anything – about Japan this weekend. I am not certain this post captures everything I want to say about it, but at this point it is the best I can do. To the friends and family who have reached out to me since the tragedy in late July, I appreciate your kind words. Thank you for sharing stories and for helping to call attention to this tragedy. We owe it to the victims to continue to fight against the stigma and negative attitudes towards the disability community. We must ensure all life is valued, so nobody has to fear that society views their life as a burden or expendable.

Because that disabled person trapped in an institutional bed? That person is not just me. It’s you.

In Appreciation of My Forever Friends

My hometown of Bainbridge, New York, is small. According to the most recent census, the population is approximately 3,000 people (of which 1,300 live in the village of Bainbridge). In a town like Bainbridge, everyone knows everyone else. I may not have appreciated growing up in a small community during my teen years, where I was one in a class of just 66 students, the youngest daughter of the manager of the grocery store. But things change as you mature, and now I am grateful I had the chance to grow up surrounded by a group of people who are my forever friends.

My forever friends have known me, quite literally, all my life. I met my best friend Stephanie at the summer playground program when I was three. Erin’s family moved across the street from my family when I was four. Sheri and I convalesced together when we both had the chicken pox in kindergarten. Rebecca, George, and I used to ride to and from religious education classes throughout elementary school. Allison volunteered to spend recess with me in third grade after I had surgery, and then was in almost every single class with me for the next 8 years. For most of high school, I saw the same friends all day as we moved from class to class.

After high school, some of us moved away for college and careers. Some stayed to make their lives in town. Though I no longer have daily contact with most of these friends, they are still the people I turn to when I need to be reminded of who I am. These are the friends who will challenge me if I say something out of line. They will question me if I appear to be acting out of character. They are quick to remind me of my importance in the world when I am facing difficult times.

This year I have come to recognize how much I value their presence in my life. During my hospitalization in January, their support and encouragement gave me the energy I needed to continue my recovery. Knowing they believed in my ability to endure fortified my resolve when the pain was too intense. Cards, emails, and letters seemed to appear whenever I was low and needed a lift.

When I was younger, the people who came back to town for their class reunions with their forever friends always seemed more mature than I currently feel. I always assumed they had life’s questions all figured out. I never imagined one day I would be the one going out to dinner with my school friends, laughing over memories, reminiscing over a meal and drinks on a summer night.

But that is exactly where I found myself on Saturday. Last weekend I gathered with some of my forever friends to commemorate 25 years since our high school graduation. Sitting at the table, laughing about summer marching band trips, prom, and favorite teachers, I was reminded how fortunate I am to have my forever friends. Time passes between our visits, yet we are held together by our shared history. We have adult lives now, and are spread in different cities and states, yet thanks to social media it is easier than ever to remain in contact. In fact, most of them will probably read how I feel about them when this post appears on Facebook.

I am most thankful to my forever friends for always accepting me for me, regardless of changing physical abilities. My forever friends always found ways to make sure I was included in activities. When my Brownie troop marched in the Memorial Day parade, my fellow Brownies pulled me in a wagon so I could be in the parade too. When we played games during recess, my friends allowed me extra time to “run” so I could play along with them. Friends pushed my wheelchair during marching band season so I could fulfill the requirement to march (it’s hard to play an instrument and wheel at the same time). They danced with me at school dances and never questioned why I was there. It wasn’t until I left high school that I encountered the “oh, it’s great to see someone like you out having fun” reaction on a dance floor.

Now that I have a disabled peer network, I have learned about the shame and isolation many of them experienced as youths. I never felt that. Sure, I was picked on by classmates. I remember being called names by other kids in school. But I also remember my friends sticking up for me, telling me I was better than those who might try to put me down. I never faced malicious bullying as a child.

Aristotle wrote, “In poverty and other misfortunes of life, true friends are a sure refuge. They keep the young out of mischief; they comfort and aid the old in their weakness, and they incite those in the prime of life to noble deeds.” My true forever friends may not have kept me out of mischief as a youngster, but their continual comfort and assistance enrich my life in many ways.

Too often, we forget to express our gratitude to our friends because their friendship has been a constant in our lives. I have used my 30 Days of Thanks posts to publicly thank those who matter to me. How about you? When was the last time you wrote a thank you note to a friend? Why not take a moment to brighten a friend’s day right now? I guarantee it will make both of you feel better.

I Want To, But…

I want to write about so many recent events and their impact on my life, like the brutal murder of 19 disabled people in Japan and Jerika Bolen’s desire to end her life, but I don’t have the energy to write anything which can compare to what others have already shared.

I want to celebrate my most recent rehabilitation victory (I transferred out of my driver’s seat into my wheelchair ALL BY MYSELF for the first time since January’s femur fracture this past week – three times!), but I am too busy trying to find Personal Assistant (PA) staff to help me get out of bed in the morning to be excited over this accomplishment.

I want to attend meetings, events and parties, but I do not have PAs available or healthy enough to work the hours I require so I can be an active member of my community this week.

I want to make plans to have fun this weekend, but I will be working on Saturday and Sunday to make up for the work time I have missed this week due to lack of PA staff.

I want to watch some of the Democratic National Convention tonight, but I will have to shower instead because I don’t yet know who is helping me get out of bed tomorrow and if they will have time to help me shower in the morning.

I want to be a more productive employee and deliver the quality my employer has come to expect from me, but meeting my basic needs is requiring time and energy which is normally devoted to work.

I want to travel, but I am forced to put those plans on hold because the only bathroom I can use is in my house.

I want, I want, I want.

But, what do I really need?

I need to remember there are people who are willing to help at a moment’s notice, and who come when called so I can get out of bed (thanks Stacey!).

I need to be grateful for my accessible vehicle, when so many are unable to access their community due to lack of transportation.

I need to share the great pieces written by disabled authors and advocates I respect, so others can learn how ableism threatens disabled people and understand the violence disabled people everywhere face.

I need to thank my employers – current and previous – for recognizing my unique needs and granting me the reasonable accommodations which make it possible for me to remain employed full time for twenty years, unlike 80% of disabled people of working age in the United States.

I need to find patience while telling myself this too shall pass, and do my best not to stress over things beyond my control.

And I need to congratulate myself for completing a goal, and posting a new post in the 38 minutes of free time I had alone today.

Not only that, but now I know who is helping me get out of bed tomorrow. Although I’m still going to shower tonight in case something happens…

Getting Lost

I have always loved to read. Some of my earliest memories involve books. My mother and older sisters frequently read to me when I was a toddler. I often say they taught me to read before I started kindergarten just so they wouldn’t have to listen to me pleading in a whiny voice.

Will you read to me?

You can ask them if it’s true. I suspect it might be.

As a child who found it difficult to walk and impossible to run, reading allowed me to explore the world. I would sit on the floor in my parents’ living room listening to the “Greatest Classical Composers” albums (we had the entire set) while reading about Tchaikovsky, Mozart, Bach, and Beethoven. Beethoven amazed me then as much as he does now. Imagine hearing the Ninth Symphony in your head and not being able to hear the performance as you conduct it? I would memorize trivial facts as I read. These will help me if I ever succeed in becoming a contestant on Jeopardy!

When I was in the third grade, Mom and I read the Little House on the Prarie series by Laura Ingalls Wilder each night before I went to bed. We would alternate the reading responsibilities. Mom would usually fall asleep when I was reading, which allowed me to get an extra chapter or two completed before she awoke with a start.

It is easy for me to get lost in a book. Once I start a compelling story I can stay with it until the end, ignoring food, responsibilities, and other people. In high school, I did not have much time for free reading during the school year. However, each summer I spent many hours in the sunshine, my face buried in a book because Mom questioned me if I spent too much time inside.

“How long are you going to sit there reading? Can’t you see it’s beautiful outside?!” 

Inevitably, this would make me take my current book out to the backyard or garage. Mom complained less about me spending the day reading if I was outside.

I blame my sister Caroline for my love of a good spy thriller. I stole her copy of Robert Ludlum’s book The Bourne Identity the summer after ninth grade. I was hooked. As soon as I was done, I checked out every Robert Ludum book in my little hometown library. They were my escape. In those pages, I visited the world beyond my little town – France, Russia, England, and more. Is it any wonder I wanted to be an exchange student and explore the world?

I discovered Frederick Forsyth during my year as an exchange student to Australia. My first host family gave me a bedroom with a full bookshelf. One rainy Saturday morning, alone in their house, I opened The Day of the Jackal after breakfast and quickly found myself lost in the story of an assassin’s attempt to murder Charles de Gaulle. I didn’t emerge from France again until my host parents returned home for dinner. That night, I questioned them about Europe, the reasons they decided to leave their home in Holland, and why they chose Australia. Reading fosters cultural growth and informed conversations.

Although I love spy thrillers, I get lost in other genres too. For several years, the Harry Potter books served as my “I’m-reading-all-day-leave-me-alone” books. I was one of those adults who eagerly bought my copy as soon as I could, although I never waited up to buy one at midnight. I do have standards.

In 2005, I purchased my copy of Harry Potter and the Half-Blood Prince as soon as it was released on July 16. I was unable to read it right away though. I was hosting the Ms. Wheelchair America pageant here in New York, and the contestants were arriving. I was surrounded by people reading the book throughout that week – pageant contestants, their families, volunteers, other hotel guests. I avoided spoilers and begged everyone to stop discussing the book whenever I was around. The book was my reward for making it through the week of the national pageant. That following Saturday, I started reading at 7:15 AM and stayed lost in Hogwarts and the Ministry of Magic until I finished the book at 12:40 AM Sunday. I collapsed exhausted on my pillow, as if I had been running from Lord Voldemort along with Harry, Ron and Hermione.

This weekend, I devoured my latest “I’m-reading-all-day-leave-me-alone” book, The Black Widow by Daniel Silva, the latest in the Gabriel Allon series. I have read all sixteen books in this series, so starting the most recent one is like becoming reacquainted with an old friend. There is the art restorer/master spy and his loyal team, as well as characters from prior novels. This time, Silva created one of his best villains – a terrorist named Saladin.

These days, I consume most books in audio format so I can accomplish other tasks while “reading.” Yesterday, I turned on my computer and hit “play” after I stirred my morning coffee. As the narrator (the wonderful George Guidall) began, I picked up my yarn and left my apartment for Paris where the opening plot scenes occur. Throughout the day and into the night, I was transported to Israel, Syria and Washington, D.C. Anyone observing me might have seen a woman crocheting in her upstate New York apartment while listening to an audiobook. Truth is, I was following my friends as they attempted to foil a terrorist scheme. I am not going to give any plot spoilers, but listening to this book felt a bit too much like listening to the news at times. The author included a forward to the book to explain how he almost delayed the book release in light of recent events in Europe. I’m glad he did not.

Today I am back to reality. I am attending to my responsibilities – “adulting” as some call it. It would be so easy to get lost in another book. There are four waiting for me on my iPod. But they will wait until next weekend, or the next time I need to escape my life for a day or two.

How about you? When did you first lose yourself in a book? Has it happened recently? What book should I try the next time I want to get lost?

Photo of a waterfall seen through ferns and leaves.

Six Months of Practicing Daily Gratitude

Six months ago, Wednesday, January 11, at this very moment, I was writhing in pain on a gurney in the emergency room at St. Peter’s Hospital waiting for the results of my x-rays. I was trying not to snap at my sister Sandy, alternating between bursts of crying followed by deep breathing. Every fifteen minutes or so, when she would try to tell me to calm down and not think too far ahead, I tried to ground myself with a gratitude list.

I am not alone.

You are here with me.

They finally got an IV started.

The orthopedic intern is cute. Cocky and arrogant, but cute.

I am not in a coma.

They brought me a warm blanket.

I can feel my feet.

That was the list. I kept repeating variations of it throughout the evening as we received confirmation of my broken femur and I was admitted to a bed on the orthopedic unit. The list grew throughout the night. I was grateful for surviving the transfer from the gurney to a hospital bed, a roll on and off the bed pan, and the manipulation of my leg into an immobilizing splint. I doubt I adequately conveyed the depth of my gratitude to Sandy for her willingness to spend that first night with me and adjust my bed every 15 minutes. The hospital was unable to locate bed controls I could operate independently, so Sandy pushed the buttons on command as I begged her to raise and lower my head and feet, adjusting pillows along the way.

I am not alone.

You are here with me.

My feet are warm.

The pain meds are working.

I am not in a coma.

I only broke one leg. Can you imagine if they were both broken?!

Over the next 2 days while I waited for surgery, the list changed. I was grateful to several nurses, but after four failed attempts I was especially appreciative of the fifth nurse who tried to insert a catheter into my bladder around 10:30 PM Thursday – the one who FINALLY got it. I was grateful for my boss, who stopped by to tell me not to worry about work. I was grateful to my friends who came to relieve Sandy so she could get some rest.

I am not alone.

You are here with me.

They are going to be able to do surgery.

I can drink all I want without having to worry about transferring to the bed pan since they finally got the catheter in. Did you ever think I would be grateful for a catheter? Thank God I have a sense of humor.

Thank God I went to Australia last year!

I’ve written about my experience with rehab, and the transition home. I’ve shared my triumphs publicly along the way through my blog and social media- transferring in and out of my van, driving, and returning to work. My updates have been some of my “most liked” posts, garnering many comments along the lines of “Atta girl!” and “Good on ya!” Throughout it all, I kept finding ways to be grateful. Even when I was in the middle of a “this-sucks-and-I-HATE-that-everything-has-changed” self-pity cry fest.

I am not alone.

You are here with me.

I have heat.

There is food in my fridge.

I can binge-watch ‘The Doctor Blake Mysteries’ all afternoon if I want and find out if the good doctor ever finally ends up with Jane.

My job allows me to work from home, for the most part.

Thank God I have an understanding employer.

Six months after the latest event which completely changed everything about my life, I recognize my significant progress. I am thrilled to be driving – yet still remain dependent on others because I cannot independently transfer from my driver’s seat to my wheelchair. I am grateful to have new Personal Assistant staff – but remain distrustful due to recent burglaries at my home. I am excited to see improvements in my knee strength and range of motion – but the chronic pain is exhausting. I realized last week that I no longer complain about pain in any other part of my body. I don’t even notice pain anywhere else anymore because it doesn’t compare to the pain in my knee. That’s not because I’m taking pain medications. I mentioned the burglaries, right? Guess what was stolen?

The biggest hurdle is my inability to access a toilet outside my home. Since I am still not weight-bearing on my broken leg, I cannot perform a stand-pivot transfer from my wheelchair. I use a slide board to transfer on and off the toilet. The board I use, combined with my limited trunk control, requires me to transfer on/off a platform seat. I wrote about this when I described transitioning home from the rehab hospital in this post. Since the only toilet I can use is located in my house, I am limited in how long I can be away from home.

Think about the number of times you use the toilet throughout each day. Now, imagine you have to return to your house every time you need to use the toilet. It doesn’t matter if you have a meeting, or a lunch appointment, or plan to volunteer somewhere in your community. Now, imagine you not only need to return home, but you need to have a nondisabled person at home with you every time you need to use the toilet. Then, imagine you are a menstruating female and think about using a slide board while you are bleeding for five days each month. Or, transfer onto your bed to use a bed pan.

Too graphic? Sorry – but it’s reality. And reality is not pretty. It’s messy and complicated. Life is like that for everyone, not just those of us who live with disability.

It is the main reason my gratitude lists “post femur fracture” are particularly important now. Because when I am stuck in the middle of of a “this-sucks-and-I-HATE-that-everything-has-changed” self-pity cry fest (and there have been lots of those these past six months), one of the only ways I know to pull myself around is to force myself to grateful. I don’t have to be grateful for the pain, or grateful for the fracture which is giving me plenty of life lessons and fodder for writing. I just need to concentrate on the start of my list, the same two lines I use to start every gratitude list I make.

I am not alone.

You are here with me.

Strength is not found in the number of repetitions performed during an exercise routine. It is not described in the extra degrees of range of motion measured during a physical therapy re-evaluation. The strength to endure comes from knowing the burden is carried by more than your own shoulders. The strength to persevere comes from understanding we don’t have to face our latest challenge alone.

Summer Camp

Summer is here in upstate New York. Many of my friends are sharing social media updates about their children and summer camp. Seeing their photos makes me nostalgic for my own summer camp experiences.

As a child, I attended a summer camp for kids with disabilities. For seven years, my parents drove me to and from Wagon Road Camp so I could spend two and a half weeks with my “camp friends” while they had a (well-deserved) respite from me.

I loved camp for many reasons. Camp had fun activities such as horseback riding, swimming and music. Camp gave me opportunities to explore my own unique abilities and taught me how to instruct other people to best help me. Most importantly, camp provided me with my first peer network of other kids with disabilities.

Growing up in a small town, I did not have interactions with other kids with disabilities. At camp, every camper had a disability. There were other kids with muscular dystrophy, cerebral palsy, cognitive disabilities, sensory disabilities and more. Some kids were more independent than me, and some needed more assistance.

I had two best friends at camp – Jen and Steph (not the same Steph who is my bestest best friend). The three of us met in Yellow Cabin our first summer at camp and instantly bonded. When we were together again the next year in Pioneer Cabin (we were moving up!) we asked the counselors to move our beds so we could all be in the same corner. We maintained this arrangement when we aged out of Pioneer and moved to Purple Cabin, home to all the cool chicks in chairs.

Each of us required different levels of personal care assistance. Steph and Jen required more help with dressing and bathing but were more independent with mobility than I was. I was still walking, but climbing hills was difficult and I fell at least once each session. Jen let me use her power wheelchair for support, slowing down so I never had to walk alone. Steph needed help eating and I often sat next to her at meals so I could feed her if a counselor got called away. The three of us always helped each other as we could without hesitation.

Because Jen and I had progressive neuromuscular disabilities, our functional ability changed each year. We weren’t the only campers to experience this. Everyone had to adjust to friends who had new equipment, or needed different levels of assistance. And every year we started camp wondering which of our friends would not be coming back for the summer.

This early recognition of the frailty of life made me more appreciative of the opportunity to develop a crucial peer network. At home, I was unique – the only student with a visible disability in my small school. However, at camp I was surrounded by kids who were just like me. They understood what it was like to always arrive through another entrance, to have the new kids stare and point at you when you entered a classroom, to know a cold could develop into pneumonia which could be a death sentence.

Quite simply, at camp I was with others who “got it.” I didn’t need to explain myself and my reaction to disability. If I spoke about frustration caused by lack of physical access at a friend’s house or school event, my camp friends all nodded in understanding because they had been excluded from full participation also. It wasn’t that we were upset at our friends for living where they lived. We just didn’t like our disabilities preventing us from having the social lives we wanted, on the terms we wanted.

Together we learned important lessons of acceptance. As a diverse group of mixed disability types and racial backgrounds, we learned respect and tolerance for others. Sure, we were having fun in the pool, in the music building, at arts and crafts. We were also building our self-advocacy skills, discovering our independence, and finding our identities.

I would love the opportunity to escape the adult world and return to summer camp for a week with my friends. How relaxing to have help just arrive whenever I need it instead of recruiting, training, scheduling and managing my personal assistant staff. What I wouldn’t give to spend another week with Jen, who passed away almost ten years ago. There are so many times I long for her wisdom and guidance, the advice she used to dole out so freely during conversations in front of a bathroom mirror while I stood brushing and styling her long blonde hair.

Children with disabilities still go to summer camps across the country. I am depending on this young group to join the disability movement and move us forward towards equality. But this summer, I hope they just enjoy the freedom of being a camper with their friends.

The Disability Advantage

Two weeks ago, I attended a seminar hosted by a local professional group for women in development. The speaker challenged those of us in the room to consider our personal reputation, or brand. Specifically, she spoke about the importance of building, protecting and repairing our reputation as individuals and also as representatives of the non-profit organizations that employ us.

I have attended other workshops and seminars where participants were encouraged to define, curate and protect their personal brand. Usually when I sit in these sessions my mind starts to wander. I start to question how much of my “brand” is influenced by my passions and beliefs, as opposed to the skills I have developed in response to living with a disability. Many of the qualities which strengthen my personal “brand” have been honed by living with a disability.

For example, I am a creative problem solver. When faced with an obstacle or barrier, I am able to quickly scan any available resources and devise a plan of action. This comes from decades of needing to locate wheelchair accessible entrances and paths, hundreds of nights spent in inaccessible hotel rooms or friend’s houses, and eighteen years of living as a wheelchair user without any roommates.

No curb cut at the corner? I start searching for the closest driveway or backtrack to find a way off the sidewalk. My wheelchair doesn’t fit through the hotel room’s bathroom door? I measure the desk chair (they’re usually on wheels) to see if it will fit. Sure, it’s an extra transfer but at least I will be able to pee without having to go downstairs to the accessible public restroom or fitness center in my pajamas every morning. I mean, I have done that when necessary. When you gotta go, you gotta go.

My disability has also given me good executive functioning skills. These are the skills required to plan, focus, remember and multi-task. When you live with a mobility disability, you are constantly using executive functioning skills – at least I am. I plot out my fluid intake for the entire day before I even get up in the morning. How much I consume is based on when I have Personal Assistant (PA) staff scheduled to help me use the bathroom, and what other tasks I need them to complete. I select my clothes with several factors in mind – the weather, where I will be going, who will be working, and how much time is available to use the bathroom. Of course, this assumes I will have staff to help me use a bathroom which suits my needs. If I do not have a PA or if I cannot use an available bathroom, then the plan will change.

Pee math – the ratio of fluid intake over length of time – is one of the most crucial planning tasks I perform every day, but definitely not the only one. I organize my life based on the PA staff scheduled to work for me. I prefer to have certain PAs perform specific tasks, and some PAs have stronger skill sets in differing areas. Therese, who is wonderful with shopping and laundry, is unable to help me shower. Margaret hates clutter and likes to clean. When she works, I know my linen closet will look very organized by the end of her shift even if I haven’t asked her to do it. Some PAs make excellent travel companions, and there are some I would never ask to accompany me on a trip.

Of course I bring these executive functioning skills with me to my paid employment where they become part of my personal “brand.” I am viewed as a leader by my peers because of my ability to build consensus, juggle multiple tasks and think creatively. Still, I wonder – would I have developed these abilities if they were not required due to life with a disability? Would I seek new ways to approach problems or would I go with the status quo? Would I anticipate and devise contingency plans for every possibility if my disability had not made this a part of everyday life?

My disability, the one thing strangers often assume must be a negative factor in my life, has provided wonderful opportunities to gain crucial skills which make me successful in navigating a world not designed for my needs. These advantages have served me well in my professional and volunteer roles, and are an integral part of my identity and personal “brand.” It has been easy to transfer my life experiences into professional opportunities to further the mission of my employer. I am a stronger employee because of the lessons learned from disability.

What unique life experiences have shaped your personal “brand?” How have you taken life lessons and used them to further your career? I’d love to hear your thoughts in the comments!

Happy Father’s Day Sam!

Once again, it is Father’s Day in the United States and some other countries. I suspect I will see many posts honoring fathers on social media today. I originally wrote this post in honor of my father, Sebastian or “Sam” as he is known to everyone, as part of my 30 Days of Thanks posts. It has been a stressful week, so I am taking the easy way out and sharing it again as most of my readers were not here for the original 30 Days series.

Happy Father’s Day to all the fathers out there, and to all who serve as father figures to others. My thoughts and prayers are with my friends and family who are facing their first Father’s Day without their father.

Thirty Days of Thanks – Sam

When I decided to do the 30 Days of Thanks challenge, I knew my mother and father would have to be mentioned. I decided to write about them separately because they each deserve their own day in this month of gratitude. People who have good relationships with their parents often credit them for shaping their own success. I never appreciated just how amazing my own parents were until I left home and realized others were not blessed with the same family love and acceptance I have known.

My father, Sam as he is known to everyone, is one of the most influential people in my life. He is outgoing, friendly, and quick with a story if given an audience. He was the manager of the grocery store in my little hometown, Bainbridge, for more than 30 years. As such, he was the first employer of many – myself included. It seems almost everyone in town knows Sam. To this day, when we go out in town together someone always says, “Hi Sam!” He will have conversations with them all even if he is in a rush.

My brother-in-law’s family used to hold an annual bluegrass festival. For several years, my father ran the concession stand. My friends and I were eager to earn money so we would spend the weekend at the festival serving hot dogs and hamburgers. We were the recipients of his pearls of wisdom as he flipped burgers and sang along to the music. Several of those sentences continue to guide me today.

“The customer is always right – even when they’re wrong.”

“I don’t care if you have a calculator or a cash register – you have to be able to count money and make change in your head.”

“People are more likely to do what needs to be done if you tell them why.”

“It doesn’t matter what job you do or what you learn in school. The most important skill you can possess is the ability to get along with people. If you can do that, you can do anything.”

If I am faced with a problem or dilemma, I ask myself what Dad would do. Unfortunately when I talk to him about things he often says, “I can’t tell you what to do – you have to figure that out on your own.” But the conversation often helps me uncover new ideas or angles I may not have considered. He usually has a story to tell about the matter at hand.

Dad is generous with his time and talents. I learned the importance of becoming engaged in my community by watching him. Bainbridge is home to an annual canoe regatta and for many years he coordinated and managed the chicken barbecue. Dad volunteered for the church, the Knights of Columbus, the Chamber of Commerce, and the Rotary Club. In his 70’s he began helping serve “the old folks” at the senior meals; many were younger than him. A few years ago when he was hospitalized I learned he had adopted a child in South America through a church charity and wanted to make sure I would continue to support him if “something happens to me.” He purchased a subscription to the New York State Conservationist  magazine for my niece when she moved to North Carolina for a teaching job so she could help her students understand New York was more than New York City.

Photo of the author, a woman in a wheelchair, and her father in front of a large pine tree.
Dad and I in front of “our tree.”

My parents were older when I came into the family. Dad claims I was planned but I’m not sure my mother was planning for daughter number six. Last year my parents celebrated their 60th wedding anniversary. Dad and I posed for a photo in front of “our tree” – the pine we planted together when I was five. As we stood there, he leaned over my shoulder and said, “I’m so glad we had you.” I choked up when I turned to kiss his cheek, grateful for the man who for so many years has served as my moral compass and a source of love. His belief in me – in all of us – and his admiration are gifts beyond measure. I honor him by doing my best in the hope I continue to make him proud.

Why I am an Ally

I am an ally because of:

  • Alex – who is kind and loyal
  • David – who is always there to offer support and encouragement, and unconditional love (except for that one night in college when my friend and I called him to help us after we discovered $1.50 pitcher night at a local dive bar and drank more than we should have – but we forgave him.)
  • George – a forever friend who is teaching us about determination and resilience as he continues to recuperate from a serious health crisis
  • Kelly – who courageously lives her life on her own terms
  • Bill – who taught me the importance of saying thank you today to the people who have influenced your life, before time runs out
  • Andy – who changes tears of sadness to tears of laughter with what most would consider inappropriate jokes
  • Tony – who made me start singing again after a two year silence
  • Al – a teacher to many, in and out of his classroom
  • Kevin – my confidant and playmate at many childhood family gatherings
  • Tom – who fearlessly chased his dream across country and is living large, proving wrong all those who doubted (I never doubted!)
  • Dominick – who has helped me become a stronger advocate through his actions and example
  • Becky – who encourages me with her creativity and optimism
  • Howard – who answered the questions of a naive college undergraduate who was struggling to be a good ally (I hope I’m doing better!)
  • Andrew – who brings #deliciouslydisabled to people each and every day
  • Joe – who manages to surprise me with Facebook comments just when I need a smile
  • Sue – who sang harmony with me for staff birthday sing-alongs at Riverview (which is not along the river, and has no views)
  • Amanda – who inspires me with her success at reaching personal milestones
  • Sam – who teaches me to be a stronger writer by sharing his experiences with honesty and vulnerability
  • Liz – who always makes meetings more fun with her wit and dry sense of humor

I am an ally because everyone deserves to live their lives free from fear, with dignity and respect.

I am an ally because I know what it feels like to be discriminated due to the way you were born, a part you cannot change, the part which makes you uniquely who you are, the part others cannot accept even though you embrace it as your identity.

I am an ally because I was taught to love others as I have been loved, not to hate.

Love is love.

And the world needs more love.
Photo of a hand with painted nails. Each nail is a different color of the rainbow with the thumb being red and pinky being blue.