Design Meets Disability

Book Cover Design Meets DisabilityRheumatoid Arthritis Guy recently came across what seems to be a wonderful book that combines the topics of design and disability. (I must admit that I have not yet read the book , but I hope to soon…) These are two of my biggest areas of personal interest, so I am quite eager to get my hands on a copy of this book.

Design Meets Disability, by Graham Pullin, was published last month by MIT Press. The book explores the potential for innovation that still exists when designing products to enhance the daily lives of people living with disabilities.

Eyeglasses have been transformed from medical necessity to fashion accessory. This revolution has come about through embracing the design culture of the fashion industry. Why shouldn’t design sensibilities also be applied to hearing aids, prosthetic limbs, and communication aids? In return, disability can provoke radical new directions in mainstream design. Charles and Ray Eames’s iconic furniture was inspired by a molded plywood leg splint that they designed for injured and disabled servicemen. Designers today could be similarly inspired by disability.

In Design Meets Disability, Graham Pullin shows us how design and disability can inspire each other. In the Eameses’ work there was a healthy tension between cut-to-the-chase problem solving and more playful explorations. Pullin offers examples of how design can meet disability today. Why, he asks, shouldn’t hearing aids be as fashionable as eyewear? What new forms of braille signage might proliferate if designers kept both sighted and visually impaired people in mind? Can simple designs avoid the need for complicated accessibility features? Can such emerging design methods as “experience prototyping” and “critical design” complement clinical trials?

Pullin also presents a series of interviews with leading designers about specific disability design projects, including stepstools for people with restricted growth, prosthetic legs (and whether they can be both honest and beautifully designed), and text-to-speech technology with tone of voice. When design meets disability, the diversity of complementary, even contradictory, approaches can enrich each field.

A few days ago, a young guy my age passed me on the sidewalk as I was getting out of a taxi. He had the coolest set of forearm crutches that I had ever seen!!! As I pulled my own set of (now boring) crutches out of the back seat, I continued to stare at his crutches as he walked down the block. (Talk about crutch envy!)

Only as he turned the corner did I notice that this young man had only one leg.

Almost immediately, I felt a slight tinge of guilt pass over me. Was it okay for me to be envious of this young man’s crutches?

So it was with some relief, and much happiness, that this morning I saw a video of athlete, actor, and activist Aimee Mullins talking about her collection of prosthetic legs. She wants them to be objects of art. (She even refers to some of her prosthetic legs “wearable sculpture”, which they definitely are!) She wants people to look at her prosthetic legs.

[YouTube video]

“A prosthetic limb doesn’t represent the need to replace loss anymore. It can stand as a symbol that the wearer has the power to create whatever it is they want to create in that space, so people that society once considered to be disabled can now become the architects of their own identities – an indeed continue to change those identities – by designing their bodies from a place of empowerment.”

This video is definitely worth watching – if only to see the part midway through – where Ms. Mullins asks the audience what exactly is a disability? “I mean – people – Pamela Anderson has more prosthetic in her body that I do, and nobody calls her disabled.” (Her words, not mine!)

In closing, I would like to ask people to take a look at Walking Wall by artist Harriet Sanderson. This permanent art installation is located in an orthopedic clinic in Seattle, and is comprised of hundreds of ash wood walking canes. This installation is beautiful both as a visual object and as a example of design meeting disability.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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The New Normal

Thinking SupermanHave you ever woken up one day with the feeling that you seem to have changed almost overnight, while the world around you continued to remain exactly the same?

Rheumatoid Arthritis Guy has been feeling this way recently. It’s a weird sensation, definitely – but it need not necessarily be a scary one. The idea of re-establishing my connections with the environment around me, with my body, and with my rheumatoid arthritis might be quite unsettling were it not for the knowledge that in the process, I have been breaking bad models and replacing them with good models.

But any change, whether for better or for worse, does take time to get used to. And to be brutally honest, my heart is still catching up to my head.

You see, just six weeks ago I was still in major denial about the effect that rheumatoid arthritis was having on my person and on my body (and, my mind). Sure, I could see it and feel it, but this did not always translate to clear thoughts of understanding. I did not take the time to stop and evaluate what was going on. Once again (I have been through this cycle multiple times), the thought of acceptance seemed to be the equivalent of throwing in the towel.

Instead, I continued to tell myself that if I stayed strong I could work through it. By default, this meant that I was telling myself that any worsening of my rheumatoid arthritis was a sign of weakness on my behalf. Looking back, these were not very healthy thoughts to be having while dealing with a progressive and chronic illness, but that is where I was.

I continued to go to power yoga five mornings a week, all the time ignoring that my joints seemed more inflamed after each session. I thought that if I “gave in” to my rheumatoid arthritis and took a few days off, that my illness would get worse. As long as I continued to do the routine exactly as I’ve always done it, then everything was okay.

Little did I know that I was going the exact opposite of what I thought – by pushing my body too far, I was actually causing harm. And by not allowing myself to take the break that I needed to heal, I was denying my reality and the presence of rheumatoid arthritis in my body.

But all of that has changed in the past month.

During the past four weeks, I have prioritized taking care of my mind and body – above everything else. Each day is filled with appointments. One day I am going to physical therapy. The next day I am going to my psychologist. The day after that I am back at physical therapy. During the day I am putting on my ulnar-deviation gloves. (I am eventually supposed to get to the point where I can wear them overnight, but I haven’t been able to wear them for more than an hour yet!)

When I am not doing something physical, I am trying to find activities to help heal my mind and spirit. I blog. (This started as and continues to be, one of my best coping mechanisms. For me, it’s like putting my personal thoughts down in a private diary – with the exception, of course, that I am making it public for all of you to read.) I practice mindfulness. I listen to meditation tapes. I read. I relax.

Through this process, I have begun to lead a life that is a much more day-to-day.  I have not been spending a lot of  time dwelling on the past, nor have I been peeking much into the future. There always seems to be something in the present that I needs to focus on. With this, I have been content.

However, a couple of days ago I looked back at my past month, and felt a little overwhelmed when I realized how much things have changed. I then projected this past month onto my future, and felt slightly depressed as I asked myself: “Is this my new normal? Days full of medical care, exercise both physical and mental, and never knowing what my ‘point of recovery’ might be?”

I bought myself back to the present, and in doing so, I was able to affirm to myself: My “new life” is working for me. And in the end, isn’t this all that counts, no matter how long it lasts?

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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60-Second Guide To Rheumatoid Arthritis

60 Second Guide to RA

During the past few years, Rheumatoid Arthritis Guy has read page after page (after page) of information about rheumatoid arthritis. I have often found many of the explanations to be somewhat dry and scientific, somewhat devoid of a real human voice of what it’s like to live with rheumatoid arthritis. Sometimes I  have difficulty getting through a multiple page article with all of the medical jargon and explanations – and I live with this illness!

I have also hoped for a short (yet comprehensive) non-technical explanation of rheumatoid arthritis that I can use to share with friends and family. On many occasions, I have struggled while trying to describe what rheumatoid arthritis is, exactly what an autoimmune illness is,  and how rheumatoid arthritis differs from osteoarthritis.

During the past few days, I decided to put together my own guide. (Yes, I was just looking for an excuse to make some more little cartoon graphics!) No medical dictionary is required to read this guide, it has lots of colorful graphics, just a dash of humor, and the best part – it only takes a minute to read. (A countdown timer is included – really!)

Please read my 60-Second Guide To RA, and let me know what you think. (I have also added a permanent link on the top navigation bar.) You can also download a pdf version of this guide.

Please don’t forget to share with friends and family! Together we can increase awareness of rheumatoid arthritis – it only takes a minute!

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy

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Sunday Break

Because there is no such thing as taking too many breaks!

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Rheumatoid Arthritis Guy turns 1 month old today. Thank you readers, it’s been a blast! My first post: Rheumatoid Arthritis Guy Saves The World!

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Lake Titicaca, located at the top of the world – literally. (12,600 feet above sea level, to be exact.) Double rainbows. Reed boats. Inca ruins. Andes Mountains. Islands. Winter solstice moon. Fisherman’s boat.

lake titicaca

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I’m a few chapters into The Brief Wonderous Life of Oscar Wao, by Junot Diaz. Fukú: a curse or doom of some kind; specifically the Curse and Doom of the New World.

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Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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