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This guest post comes from Brianna Murray. She originally made this post on her Facebook page after participating in a focus group about guide dogs. While not originally created for this blog, I think it will inform and entertain our readers.

Brianna Murray lives in NJ with her active Seeing Eye dog Quebec and her retired guide dog Hopps.  She leads a biweekly Mental Health and Wellness Support Group for Guide Dog handlers all over the world and has held a number of leadership positions in the guide dog space.  She is currently working with a large male golden retriever named Quebec from the Seeing Eye. You can find her on Facebook here.

“Why do you choose to work with a guide dog?” This is a question I was asked tonight, and one that comes up often as I navigate the world day to day. It’s funny because that question has both the simplest answer, and also the most complex answer in the world. Simply, I work with a guide because it makes me happy, confident, and complete. But there’s so much more to it.

About a year and a half before I received my first guide, I went to a conference with friends. One friend had a retired guide who was also attending, and she gave me the task of looking out for him and taking him out to use the bathroom, as she knew I wanted to learn more about guide dogs. As a child, I didn’t want one. I thought I could be independent all by myself. That night though, when I took her dog outside, even though he was too old to work any longer, Zach intuitively sensed that I could not see and guided me only using a leash with no harness, out to the bathroom area in pitch black darkness. I knew from that moment on that I wanted to be a part of that. I wanted to understand how these amazing animals could read their humans so well, and why even once they were retired their selflessness and love of their work always won in the end.

That dog was very very seasoned, and when I got my first dog a year and a half later, it simply was not like that. My dog stole ice cream from a baby, instigated play time with the other dogs in the class, cried when she met me, and cried even more the day she saw her puppy raiser again and realized she was stuck with me now. She moped when I didn’t give her all the space on my twin dorm room bed, or when we walked to class in the rain, or when we stayed in the library studying too late for the 14th night in a row. She got way too excited when someone on campus called her name, and one time she accidentally got the zoomies in harness when leaves blew past her face. She was anxious, shed impossible amounts, and took a lot of effort and care that I didn’t always know how to give as a teenager. But from the moment I held her harness in my hand for the first time, my life was changed. Traveling was always a burden for me, and when it became a team activity it wasn’t as stressful. When people talked about me on my college campus, it wasn’t about blindness or disability any more, but instead it was about that cute dog. Having a guide broke the barrier between disability and “normality” and made me an active part of things for the first time in my life. Instead of avoiding every social situation, I made friends and thrived. Instead of traveling being a daunting guessing game, it was an adventure in teamwork.

When Lacey caught a disease from the hospital I was interning at, it was expensive, painful for her, and one of the hardest things I’ve ever watched. When my second dog Daisy was deemed unsafe after two weeks together, I wondered if I was ever meant to work with a guide again. When Hopps’s experience was also cut short, due to a bad hip, I wondered why I was cursed. When Belle retired after just 6 months due to kidney disease, I honestly doubted I had the strength to carry on as a handler. Having a guide dog is expensive. It’s emotional. It’s hard. It’s the saddest thing I’ve ever been through. It’s the most painful thing I could possibly imagine. It’s raw, and it’s real, and it breaks your heart over and over and over. It tests you every single day, and half the time you make the wrong choice. It’s daunting, challenging, terrifying, exhausting, and the hardest thing I’ve ever done in my life. But, in contrast it’s the one thing that truly makes my life complete.

Having a guide is watching Quebec choose to lie on the hard kitchen floor right by my side as I work every day. He knows if he lies that close, he’ll have to move every time I get up, and that there is a softer dog bed nearby, but he prefers to be able to touch me every so often and remind me that he’s there. Having a guide is watching Hopps fight through a car accident, a tumor, a bad hip, two dog attacks, and various other things because she loves me, work, and has a positive spirit. Having a guide is having 4 dogs literally push me out of the way of cars that would have otherwise hit us. Having a guide is enjoying taking walks and hikes for the first time in my life with Quebec. Having a guide is having someone to snuggle with on the bad days, and someone to wake up with every time you have insomnia. It’s having a partner to problem solve on every route. It’s Quebec forcing you to stop and play fetch when work gets too stressful. Hopss forcing herself on your lap when you thought you wanted to be alone. Belle finally connecting to you after months of testing you. Daisy, teaching you how to advocate. And Lacey, helping you grow up into the adult you were always meant to be. Having guides is like building a family. It’s hard, and takes effort and work on everyone’s part. But life just wouldn’t be the same without it. Having a guide is freedom, joy, independence, love, selflessness, connection, strength, teamwork, and partnership. It’s the strongest love you’ll ever feel, the tightest bond, and the most intense connectedness. It’s the ability to fly, with nothing holding you back for the first time in your life. Yes, it is a roller-coaster sometimes, but there is literally not a single day that I regret getting on the ride. To me, having a guide is definitely challenging, but the experiences I’ve had outweigh the challenges every time. Lacey, Daisy, Hopps, Belle, and Quebec are all a part of me every day. They’ve helped me grow, learn, and trust. Being a guide dog handler is full of obstacles, but to me it’s the truest form of independence.

I know, it’s been a while since you’ve seen an update on this blog, and not for any particular reason. I’ve had some professional twists and turns this year. In April I became the director of research at the American Foundation for the Blind

Which has come with many competing responsibilities. After some consideration, though, I’ve decided to reactivate the blog. I appreciate those of you who have subscribed, and I know you are looking to learn from the lived experiences of disabled people. The posts in the coming weeks will be a combination of guest posts from disabled bloggers on a variety of topics, updates on our research work at AFB, and updates related to my new book, Just Human: The Quest for Disability Wisdom, Respect, and Inclusion.

Speaking of said book, I appreciate all those who bought one or more copies during its first almost-nine months on the market, bringing it to a sales total of 567 copies so far! I am also very appreciative of the 44 individuals who rated the book on Amazon and gave it an average rating of 4.98! (I guess the readers who didn’t like it decided not to rate it…) I’ve shared a few reviews below. Interested? Check it out on Amazon! Or learn how to get an accessible copy here!

“This was a remarkable book. The author, blind since birth, a phD social psychologist, describes what she learned growing up combined with what she’s learned as a scholar and researcher. From her vivid descriptions of bullying in middle school, to finding love, to learning to get on in the world, to attaining her dream job, the book draws you in . Her insights apply not just to how people with visual impairment are regarded by the able bodied population but also to those with other disabilities and indeed those who for whatever reason ( skin color, ethnicity, gender, etc) may be subject to bias and discrimination. She asks that people regard her not with pity for her impairment and not place her on a pedestal ( as a source of inspiration) but regard her as ‘just human’ and relate to her by listening and withholding judgement . For someone so young ( 36), her wisdom is remarkable. The book is well written and very readable. She makes very difficult concepts fully understandable, and she communicates her passions, successes and her frustrations very effectively. As a pediatrician who has worked with kids with all sorts of disabilities, I think it will aid parents and clinicians in adopting more helpful approaches to use . Her insights about bias and discrimination and “deescalation ” in the broader society are also worthy of pondering .”

““JUST HUMAN” by Arielle Silverman, PhD is a wonderful mix of autobiographical content and expert social scientific analysis. The story begins as her Jewish American parents realize that she was born blind. She shares her recollections of learning at home, in the public school, at her local summer camp for blind children, at an adult training center for the blind, and at the university. I found myself smiling broadly at her successes and silently egging her on when she fell short. In testament to her skill as a storyteller, I related easily and fully to her adventures and misadventures whether in the classroom, the kitchen or the street (literally-see chapter 12).
Her writing style is easy and pleasant to read, straight to the point, honest and gentle on the reader’s conscience. She is not interested in adding to anyone’s guilt, but rather in challenging people with and without disabilities to relinquish long-standing, erroneous assumptions about each other. Readers begin to understand the abilities of a blind person to function fully and capably in their communities when given the chance and the needed accommodations.
Her writing is broad based and timely as she points out the lessons her stories teach for inclusion more generally, whether across lines of race, power, intellect, wealth, or health. Dr. Silverman has clearly set her heart and great intelligence to work helping people with a variety of strengths and difficulties to live, work and respect each other in personal and professional venues. Today, she works as a research specialist at the American Foundation for the Blind, co-coordinates a mentoring program for blind youth, and offers trainings in a philosophy she calls “disability wisdom.”
This book should be mandatory reading for anyone working in, or training students in, the fields of education, business, medicine, architecture, or law. In fact, it is a wonderful read for any parent raising children today.”

“I subscribe to Dr. Silverman’s Disability Wisdom blog, which is terrific, so I was excited to read her book, and she does not disappoint. The way the book is written – in such an accessible, relatable and engaging tone, makes it one I looked forward to reading at the end of the day, as a treat after work. Her suggestions are valuable for all readers, because her wisdom applies to humans regardless of their abilities. One passage stays with me, as Dr. Silverman describes one of many times she was ‘helped’ without asking or giving consent and was left the worse for it…this stays with me as a sharp illustration to us in how we presume to know another’s situation, and often act ‘on their behalf’ or ‘advise’ without ever finding out or educating ourselves on what’s needed. There is no finger pointing in this book, just wonderful relatable stories, and solid easy to follow insights. Well done.”

This post comes from one of our recurring guest bloggers, Reina Grosvalet. Reina is living with mitochondrial disease but is currently doing what she can to make the best of life. She spends time not only working and caring for her cats and her cat sanctuary, but she also tirelessly educates others on what it’s like to live with debilitating and chronic illness and pioneers to make the world a more equitable and accessible place for those with disabilities.

The time is seven A.M. Your alarm is ringing, and it is time to wake up and get ready for the day. You press the snooze button hoping for just a bit more sleep. This is a routine that is all too familiar for the working class. For someone with chronic illness, things are far different.

Starting the Day with Chronic Illness

When someone with chronic illness wakes up for the day, the energy batteries are starting out at 50% or less. A person with chronic illness is not going to start the day with a full charge of energy in the same way as a healthy person. I like to compare those of us with chronic illness to a cell phone with an old battery. Think of how an old cell phone functions when the battery capacity is no longer at its peak because the battery is old. With such a cell phone, the user is limited to what tasks can be performed. The user must determine which apps are most important to run and only do what is essential to make the most of this old cell phone battery.

Chronic illness and the energy deficiencies that come along with it limits how much we can get done. Ad pain to the mix, and we are drained even further. Even though many do not believe this, but everyday tasks can be immensely draining. Depending on how bad the illness is, getting dressed and getting out the door can be a huge ordeal. The morning routine is so taxing to some that they feel drained before they even arrive at their places of employment.

Those of us with chronic illness need to determine how much we can do. If we work or care for a household, we must look at all our tasks and determine what is most essential and what can be put off until later. We cannot afford to use our limited energy on nonessential tasks. Counting the cost is a daily occurrence in the life of someone with chronic illness.

Counting the Cost

When we want to work, perform chores, take a vacation, socialize or engage in fun activities, we need to look at our energy budget. We assess how we are feeling, and we determine what each activity will cost us. Then, we work hard to balance our energy budget in the same way we balance our checkbooks. We strive hard not to go into energy debt because if we do, we pay a steep price. For some, it is a week in bed. For others, there are more severe consequences, such as a metabolic crash or crisis. We need to determine how much we can do without pushing our bodies into energy debt.

Balancing the energy budget takes lots of planning. Some of us with chronic illness decide that certain activities can only be done on certain days to allow time to rest or to keep from overexerting ourselves and suffering tremendously. For many of us who work, we may choose to only care for housework and errands on weekends and do nothing else but work and commuting during the week. Those of us who want to engage in a fun activity that may last for the entire day will take a period of rest that lasts anywhere from a couple of days to one week to ensure we have the energy we need to get through that day, and sometimes, that is not even enough. It all depends on the extent of the illness and how it impacts our lives.

Chronic Illness and Today’s work Culture

Living with chronic illness is challenging, especially when coping with today’s workplace culture which holds constant productivity in high regard. Many of us who live with chronic illness push ourselves into energy debt trying to keep up with the demands of our employers, and we must spend our weekends recharging and not doing anything else which causes our quality of life to deteriorate significantly. When all that is done is working and resting, there is no time for socializing, doing fun activities and caring for other responsibilities.

Many of us with chronic illness need to assess our situations on a continual basis and make changes where necessary. If we find that our current jobs are too taxing, we need to change our course and seek employment that will suit our circumstances. It is not unheard of for those living with chronic illness to work 100% remote because the demands of commuting and being at the office are too much. Finding jobs we can do and having supportive employers make all of the difference in our world.

My Experience with Chronic Illness

As I got older and as my condition progressed, I found myself having less energy to get all the things done that I needed to in a day. I have Mitochondrial Myopathy, a form of Mitochondrial Disease. As the disease progresses, the sufferer contends with less energy because more of the mitochondria start to fail. The mitochondria are the power houses of our cells, and they provide us with the energy to function and sustain life. In addition to contending with less energy, I have also experienced more nerve pain.

At first, I was able to commute and work at the office with some difficulty, but it was manageable. I needed to be careful how many other activities I did outside of work that would sap my energy. I had a rule that household chores and errands could not be done during the week as I could not work and take care of my chores and errands. Commuting on public transportation to and from work almost three hours each way took lots out of me. And of course, I also had to work eight plus hours a day. This strategy of handling chores and errands only on weekends worked for me for many years. Then, my health deteriorated so much that this strategy no longer worked.

Now, things are different. I must work from home as a 100% remote worker. I simply do not have the health or energy to commute and work in an office setting. Quite often, I work from my bed. I am thankful that my employer is accommodating and understands what I need in order for me to continue to do the job that I love. I am thankful I have a large support network who understands me and who is willing to work with me and love me struggles and all.

For those of us who live with chronic illness, we need love, compassion and understanding. If we tell you our energy levels are low, please accept that and show us all the love and compassion you can. If we need help with activities, please extend your hand without judgment. Also, understand that just because we could do something yesterday does not mean we can do it today because we may be too tired or in too much pain. Also, do not consider us to be lazy. Sometimes, even the smallest activities cause us to feel like we want to fall out. Being part of this chronic illness journey is tough enough, but your love and understanding can make a significant difference in our lives.

First, a big thank-you to all who have read, reviewed, and promoted my new book. We couldn’t do it without all of you!

The book is available on Amazon in paperback and Kindle formats, or from me in accessible PDF, MP3 audio (using synthesized speech), digital braille, and hard-copy braille.

Check out all the information here!

A self-narrated Audible version is planned for early 2022.

Want to learn more about the book?

Check out my interview on the BlindAbilities podcast (transcript included)

Check out a video about the book, including a short reading

I love when things happen ahead of schedule. It’s a rare joy that helps balance some of the franticness of life.

My memoir, titled Just Human: The Quest for Disability Wisdom, Respect, and Inclusion, is now available for purchase in paperback and Kindle formats here:

Accessible PDF and hard-copy braille formats are also available through direct purchase, with other formats coming soon! Email me at arielle@disabilitywisdom.com for more details.

About the book:

Born without sight, Dr. Arielle Silverman has never missed the visual. Being blind never bothered her much but, as she grew, she discovered others saw her blindness very differently. Many people saw her as either helpless or inspirational, but rarely did they see her as just human, with the same capacities and desires as her peers.

Arielle has spent a lifetime exploring ways to foster respect and inclusion, not only for blind people like her, but for all of us whose bodies or minds differ from the norm.

In Just Human, she reflects on her formative years and presents unique anecdotes from her life that carry teachable moments for all of us. She recalls the feel of her mother’s embrace, the smell of her grandparents’ brisket, the inner sensations of a preteen crush, the music on her wedding day, and scholarly lessons from her dissertation research. Her words paint pictures from her mind’s eye: a vision of a world where we can radically accept ourselves and our fellow humans, while at the same time work to change systems of inequality. As she writes of the past and the present, Arielle looks toward the future, considering how we can build a more inclusive world for those who come after us.

………..

“Just Human will inspire you… Not in the feel-good way some stories do, staying at the surface level of the lives of people with disabilities. Instead, Arielle’s memoir immerses you into the real-life reflections of a blind woman, from birth to adulthood. At times heartbreaking and at other times light-hearted, her narrative cloth methodically weaves in threads of disability history, theory, and wisdom. This vast compilation of experience, research, and applicable strategies has the potential to heal age-old misconceptions and stereotypes that perpetuate barriers to inclusion and equality. Arielle has done much of the work for us. Now we must be willing to dive below the surface to listen, human to human.”

—Sarah Mason, mother of a blind daughter, and educator of blind children and youth