Jessica Murray

Human Development, CUNY Graduate Center

Category: Blog

Elevators are for Everyone

There was a rally hosted by TransitCenter this morning in front of MTA HQ in lower Manhattan to announce the launch of their new campaign: Access Denied, Making the MTA Subway System Accessible to All New Yorkers. I created this sign a few days ago, inspired by years of conversations with disabled activists and others who have noticed that elevators are needed by plenty of other folks; mothers with strollers, young children, people with temporary disabilities, people with invisible disabilities, and able-bodied people trying to roll their luggage to the airport.

Please feel free to use and distribute. You can download a high-resolution PDF from the link below the CC license.

elevators-are-for-everyone-rainbow

Creative Commons License
Elevators are for everyone by Jessica Murray is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License. Based on a work at http://accessibleicon.org/.

Awareness and Denial

Today is World MS Day, meant to bring  awareness to the disease and how it impacts the 2.5 million people worldwide who have been diagnosed. Multiple Sclerosis is an autoimmune disease affecting the central nervous system, with symptoms ranging from numbness, to blurred vision,  loss of balance and motor skills, nerve pain, and weakness and fatigue. People with MS also frequently suffer from depression and other emotional changes. MS is sometimes compared to faulty wiring; holes in the protective myelin sheath surrounding our nerves cause misfires in the signals our brains send to the rest of our bodies, resulting in a wide range of symptoms. Rates of progression vary greatly and no cause or cure is currently known. Primary progressive MS usually follows a relentless continuous path of declining function. Relapsing remitting MS advances in no predictable way, with each relapse worsening myelin damage in different parts of the brain and nervous system. 

Unfortunately for those with “invisible” symptoms that come and go, denial is pretty common. I don’t necessarily mean denial about having a chronic disease, although that certainly happens, too. When taking a job, starting a relationship, or meeting new friends, the question of if and when to disclose having MS is a struggle for many, and for some, the diagnosis remains a secret. The empathetic response that occurs automatically is a small part of this reluctance to share. Some people know someone with MS, and their experience may be the only knowledge they have of the disease. Others may not know anything about the disease, but sclerosis is a terrible-sounding word, and multiple just makes it seem that much worse. The abbreviation detaches the disease from the meaning and softens the delivery, as long as the other person knows what it stands for.

I experienced my first symptoms of multiple sclerosis in 2005 and was officially diagnosed in 2008. For most of the time since, I’ve managed well with disease modifying treatment and maintaining certain routines. In 2011, I suffered a relapse that affected my motor functions for the first time. The left side of my body became sluggish, and it was difficult to pick up my foot to walk. My hands felt arthritic, and my left hand was nearly unusable. The loss of upper bodily function rendered me unable to work. I scheduled an emergency appointment with my neurologist and received a steroid IV. Both my upper and lower body motor functions were back to normal within a few days, but it took two months for my symptoms to completely abate. 

This experience opened my eyes to the reality of becoming disabled; the loss of motor control and movement was sudden and unexpected. Then, and maybe even now, I was in a state of denial about the possibility of becoming permanently disabled. It has taken me a number of years to accept the unknowable, and to become more comfortable and open in telling people I have multiple sclerosis. I no longer worry about sharing my diagnosis, but as long as the MS Society offers workshops for job-seekers to discuss if, when and how to tell an employer they have MS, society can’t reach a state of full awareness. Attaining worldwide awareness will happen when denial ends, acceptance begins, and people with multiple sclerosis no longer fear saying its name. 

Advice from an Active Octogenarian

Seen on humansofnewyork.com

“I’m around eighty years old. I’m not going to say exactly how old because my friends might see this. But the important thing is to keep moving! I just got back from Carnegie Hall, and yesterday I swam a quarter mile. But that’s nothing. Two years ago I was in Syria when Egypt blew up.”

Photo of octogenarian woman

This really caught my attention because I’m interested in how mobility impacts our emotional well-being later in life. Plus, it’s a nice reminder of the fact that New Yorkers enjoy an average two year longer life expectancy than the rest of the U.S. 

Ableism, Bionics, and Helper Robots

As I read more disability literature, I’ve been giving a lot of thought to ableism, a term that describes not only prejudice against people with disabilities, but also the idea that people with disabilities should be fixed. I recently came across this post which helps to clarify the meaning of the word from the perspective of a disabled feminist. 

The process of doing research into mobility disability opens my eyes a bit more every day to the unique circumstances, and many perspectives that define disability. I recently watched this amazing TED talk by MIT Media Lab’s Biomechatronics leader, Hugh Herr, who is developing bionic limbs for himself and others. Herr lost both legs in a climbing accident 30 years ago, but never accepted the thought that he was broken, and has worked for 30 years to perfect his new legs. His view of disability is unique and inspiring, and completely at odds with some of the literature I have read. Ableism, defined as ‘fixing’ someone with disabilities is usually, understandably, met with hostility by many in the disabled community. People with different kinds of disabilities resist efforts to ‘fix their disability’ because their identity is so closely aligned with their physicality. At the same time, incredible advances in technology, such as Herr’s bionic legs and exoskeletons are making the possibility of restoring physiological functionality a reality. The cost of these bionic limbs and exoskeletons is currently prohibitively expensive, but if they were made widely available and affordable, would people with mobility disabilities take the chance to walk again? 

The truth is that almost all of us, if we are fortunate to live long enough, will experience a decline in our mobility and lose our ability to function to some degree. People are notoriously bad at estimating risk, but the truth is that adults aged 20 have a 1 in 4 chance of becoming disabled by the time they retire. According to the census, the rate of ambulatory disability begins increasing rapidly for people in their mid-60’s. A friend sent me another TED talk about how we will rely on robots in the future to help us with this reality, and act as caretakers as we get older and more frail. Near the end of the video, Rodney Brooks explains how robots will fill the care-taking gap that is unfolding before our eyes. Will people embrace these helper robots, or will the robots come to symbolize their vulnerability? Will the robots help us become more comfortable with the reality that we will all need help someday?

Going back to Hugh Herr’s talk, I am glad that he mentions other physiological disabilities that we often don’t consider as a disability, like debilitating depression. There are so many reasons beyond physical impairment that cause immobility and they should all be addressed to guarantee everyone’s right to participate in society. My favorite quote from his TED talk: “Humans are not disabled. A person can never be broken. Our built environment, our technologies, are broken and disabled. We the people need not accept our limitations, but can transcend disability through technological innovation.”

Thesis Study: Work-Life Quality for People with Mobility Disability Living in New York City

SEEKING PARTICIPANTS 
How does mobility disability impact your life? I’m looking for people between the ages of 18-64, who are currently working (part-time, full-time, or self-employed) or looking for work, and have severe difficulty walking or climbing stairs. If participants live with a significant other, their partner will also be invited to participate. Members of the study will be asked for a 60-90 minute interview about transportation, home and work environments. Participants will be paid $40 at the completion of the interview. 

If you are interested in sharing your experience, please contact Jessica Murray by phone: 214-454-6298 or email: jmurray@gc.cuny.edu. Interviews will be conducted until July 11, 2014. 

Privacy and confidentiality will be ensured by removing identifiable information from notes, transcripts and the final analysis. More details here: Adult Consent. I also welcome comments and suggestions, which can be posted below, or sent to jmurray@gc.cuny.edu.

BACKGROUND AND MOTIVATION
A long-time interest  of mine is the psychological impact of different commute modes, and the ways in which the experience of the commute spills over into work and home domains. The day in, day out experience of getting to work deserves more attention, because it can have a huge impact on overall quality of life. During the course of researching this topic for a class I took at the Graduate Center last spring, Critical Social Environmental Policy, I realized that mode choice in New York City is very limited for people with mobility disabilities. As I started digging into the transportation policy issues impacting people with mobility disabilities, I also discovered disparities in accessibility in the other areas of life that interest me; work and home. While these problems are big, they’re not insurmountable, but it seems there is a lack of political will to tackle them. The people most impacted typically don’t have the fiscal power needed to hold businesses, building developers, or transportation entities accountable. I outlined many of these topics in my final paper for the course,  Issues Impacting Work Life Quality for People with Mobility Limitations Living in NYC.

I’m currently expanding this paper for my thesis, to include details about the unfolding victory for taxi accessibility, and to include the latest census numbers. More importantly, I want to hear some different perspectives on the real impact of the built environment on quality of life, and hear what kinds of policy ideas could improve home, work , and transportation environments for people with a mobility disability. My goal is to explore a variety of experiences, see how people view environmental limitations, and see what policy areas have the greatest real impact.

 

Green Again

I think the news that I’ve been accepted into the Human Development doctoral program has finally sunk in. The path has been an interesting journey, and not the typical track most academics take. I feel like I’m totally green again, starting on a huge new endeavor, eager to gain new experiences. When I worked as a designer, getting a job in advertising was a sensible step that led to better wages, but also less life satisfaction. After a few years of working in New York City, I started thinking more about the things around work and home satisfaction, the political and environmental forces that shape our day-to-day existence. When I decided to leave my last job, I knew I wouldn’t be happy to get another advertising job, and I made a huge, improbable leap to apply for a PhD program at CUNY. I was not successful in this endeavor, but I got a second chance with the MALS program, and an opportunity to really see what is expected of doctoral students (hint, it was not what I thought in 2012). The courses I’ve taken in the past two years in the Psychology of Work and Family MALS track, and in the Human Development and Environmental Psychology programs have allowed me to take an interdisciplinary approach to studying psychology, one that I hope to carry with me in the years ahead.

I am thankful to so many people who have influenced my graduate work so far; Les Gribben for suggesting the MALS program, Karen Lyness and Kristen Shockley, who taught me why Work-Life issues matter so much, David Chapin for showing me the connection between mobility and (un)supportive environments, John Seley for getting me hooked on local politics and advising my thesis , Susan Saegert for giving me a better understanding of what research is and how to do it, and Colette Daiute for opening my eyes to the big picture beyond New York. I also want to thank all the wonderful students and scholars I’ve met in the developmental, environmental and critical social/personality programs, I look forward to our future development and friendships.

© 2017 Jessica Murray

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