Gaining Access

People who don’t read poetry often avoid it because it’s “inaccessible,” confusing, compressed, and in need of very focused attention. They want to figure out the puzzle, rather than let the poem wash over them, ask it questions, and read it again. To me, poetry is far more accessible than many novels; of course, it’s what I do and what I’ve studied, but poetry also provides the reader with a burst of self-sustaining energy so powerful that it blows me away. Poetry is immediate. Cognitively, I can pay attention to it without getting lost or forgetting plot points.

Poetry is also easier to read for me, physically, than prose. My eye doesn’t need to move as much in order to keep up. What is inaccessible to most readers offers me access to the world of words, to my world, where poetic lines serve as a form of automatic doors, or elevators, or accessible parking spaces, ramps, lowered countertops. It invites me to experience it without discomfort. Poetry shapes itself around my needs, unless the page is bright white or the print is incredibly small, or the pages so thin that the letters swirl together, backwards and forwards. 

My access needs are not identical to everyone’s, even among other people living with residual ocular MS symptoms, who may need a brighter page, higher contrast — access accommodations that would make my eye ache. Those of us living with multiple sclerosis are varied in our access needs, and people living with other disabilities are even more diverse. So when we talk about something like “universal design,” inclusive architecture, design, and landscaping that welcomes people with disabilities, we begin with basics and hopefully move towards details that make living easier for many individuals with varied impairments. What I love about universal design is that it presumes that the problem lies not with disabled people but with the ways architecture and design exclude us, and that this exclusion can be turned into something far more inclusive, eventually adopted as “normal” for the rest of society.

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This summer I was invited to speak at Hiram College for their summer seminar dedicated to seeking connections between disability, age, and healthcare. Towards the end of the four days, we began to discuss accessibility, particularly the specific access needs for people with age-acquired disabilities. Aside from increased attention to the needs addressed thus far by universal design, what specific needs, such as those related to manual dexterity impairments shared by seniors and people with MS alike, might need attention? How could cognitive needs be addressed more fully? We also asked ourselves what happens when hearing impairment comes at a point in life when learning sign language is too difficult due to cognitive challenges that come with age. What happens when cataracts block the ability to read the captioned transcript of what a person can’t hear? Although age-acquired hearing and vision loss are publically accepted as part of the aging process, older adults can feel voiceless and excluded from society when the world does not respond to their acquired impairments, in much the same way people living with similar MS symptoms might feel excluded and voiceless. I have an inkling that this will change in the coming years as Baby Boomers age.  People living with MS could help lead the way toward, and also benefit from, new points of access offered to our aging population.

When I returned home from Hiram, I was wheeled to the gate where a cart was waiting. Two silver-haired women were already sitting on it. I climbed on. More seniors stood and waited to catch a cart, and our driver spent a while calling-in cart reinforcements so that everyone could make it to their destinations. After some time, we were all aboard three little white buggies that would take us to specific gates in different terminals, or in my case, to baggage claim. We formed a three-car train, each with its different driver. I knew I was definitely back in Texas when the driver of the first cart shouted out, “Yee-ha!” to people blocking his way. Mostly, though, I got the feeling that soon enough, there will be greater need for this kind of access to the world, and that quite possibly, the world might become far more accessible to people with MS. “Normal” is shifting. It’s been a long time coming.

If you could invent a contraption that offered you greater access to the world, what would it be? What do you already find useful? If you could redesign a room or building, how would you increase its access?

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Laurie

Laurie Clements Lambeth, Author

Laurie Clements Lambeth’s MS diagnosis at the age of seventeen brought her to poetry. Her first book Veil and Burn (University of Illinois Press, 2008) was selected for the 2006 National Poetry Series. Currently at work on her second poetry collection and a book of creative nonfiction about MS, she also teaches in the Medicine and Society program at the University of Houston, where she earned MFA and PhD degrees in Creative Writing. To learn more about her work, please visit www.laurieclementslambeth.com

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    7 Comments

  • JAMES   Sep 22, 2014 4:11 PM
    I wish I could invent something to be able to read long stories without getting so fatigued or falling asleep when I listen to audio And when I mean long stories I mean two paragraphs
  • msandreaw  Sep 22, 2014 6:14 PM
    I get very sleepy very quickly when reading anything for more than a few minutes!
  • Kris   Sep 22, 2014 8:58 PM
    A more versatile cane/walking stick that can adapt to the ever changing circumstances of navigating the world with MS, but not yet ready for the wheelchair or walker. To give as much confidence and feeling of independence before the time of foot drop, fatigue, and the other myriad of leg issues that present themselves.
  • Charlene   Sep 22, 2014 9:21 PM
    Funny my fiance and I were talking about this tonight walking home from dinner. I did a lot of pruning and raking today and I sit on my walker while pruning and I said I wish I could invent something to make it easier to cut and rake in tight areas as I can not bend over to do it by hand or I fall into the bushes.
  • Tom   Sep 22, 2014 11:44 PM
    its ok.
    thanks Laurie
  • Val Stewart   Sep 24, 2014 12:04 AM
    I have RRMS and I would like opticians to develop lens's, to improve my vision in my left eye. As weirdly I can read to the bottom of the opticians charge.
    Also in the hot weather a type of clothing that keeps me cool, heat really affects my MS. Before anyone says it, not the high fashion cooling vest!
    Hello to everyone, from Bonnie Scotland!
  • Kdub155   Oct 3, 2014 10:36 PM
    Hi there,
    Thanks for sparking ideas with this post. It reminds me of an initiative, called World Cerebral Palsy Day, where ideas are submitted as to how to make life less barrier-entrenched for those with CP. Though I have CP myself, I do wish the project extended to more disabilities, as we have many similarities and struggles across the board and could likely share in many of the proposed changes. Anyway, this post is certainly a great appeal to the "shifting" accessibility of things. Kudos.