30 Days of Thanks Day 29: Technology

Today I saw an online video advertisement for a “lazy arm.” This device mounts to a table or headboard and holds a person’s tablet or smartphone. While the advertisement touted it as perfect for “your lazy friend,” I thought of disabled people I know who could find more independence with this device.

This afternoon I used my phone to connect with friends in Texas, Tasmania, and Alaska. I confirmed my doctor appointment and booked my paratransit bus for tomorrow without needing to make a phone call.

Tonight I will sleep using a machine that has a computer chip to record my breathing. When my doctor needs to know about my sleep and breathing patterns I simply eject the child and bring it to the office.

Every day, my life is made more independent by technology. Some advancements are large, and sometimes the simplest technology is the most profound. I am grateful for the increased access, and I look forward to what is coming next.

The Benefit of Being Present

Sometimes my boss asks me to attend events on her behalf when she is already booked or otherwise unavailable. I am always wiling to network with new groups and I enjoy learning, so when she asked me to go to a recent annual conference for a statewide association, I agreed. The particular session she highlighted sounded interesting and was pertinent to my job.

Early last Friday, I settled at a table in the hotel conference room with coffee and yogurt about ten minutes before the session. Others soon joined me and we exchanged the usual introductory chit chat. By the time the session started, the room was about three-quarters full of people doing exactly the same.

The speaker was excellent. His talk featured many “real-world” examples and included simple tips we could bring back to our jobs and start immediately. I am always grateful when speakers provide useful ideas which don’t require a huge budget or time to implement.

My seat at the edge of the room afforded me a clear view of most of the audience as well as the presenter. From my location, I could almost see the audience from the point of view of the speaker. What I saw disheartened me.

I expected to see alert faces, but instead I saw the tops of heads bowed down as the majority of people used their cell phones in their laps. One woman at the table next to me spent the entire session (45 minutes) emailing, texting or writing on her phone. A man at a table on the other side of the room was on Facebook for long stretches of time. I could tell because he was seated in front of a mirror and his phone was reflected over his shoulder in the image behind him.

Now, let me be clear. This was NOT a boring speaker. He was engaging, clearly an expert in his subject matter, and easy to understand. He was doing everything right.

The audience was not.

About half-way through the session, I realized he knew he had lost most of the audience. He began to single out those of us who were paying attention, maintaining eye contact with the faces he could see. I began to nod and smile frequently in an attempt to give him encouraging feedback. As a public speaker, I know how difficult it is to be in front of a group and sense none of the audience is “with you.” He continued on, but frustration was evident in his voice when someone’s cell phone rang at high volume towards the end of his talk. The culprit? Mr. Facebooker, who guiltily raced from the room as he answered the call.

These devices we rely on are wonderful. They connect us to friends and family around the world. In an instant, we are able to reach others during a time of need. We take photos and share them with elderly relatives who cannot visit in person. We can check our work email and our personal email, update social media, and order lunch all in the span of five minutes if we want.

But when we spend all our time looking down at our screens, we miss what is happening around us in the present. The woman who spent the entire conference session on her phone didn’t see the examples on the projector and didn’t hear the joke about the nurse. I know she didn’t hear it because she was the only person at her table who didn’t laugh and clap after the joke.

I’m not saying I have not been guilty of using my phone in what some might consider inappropriate settings such as a conference presentation or dinner with friends. Because I use my phone to help me manage the Personal Assistants I employ, there are times I need to respond to one of my employees instantly about their work shift. However, I make every effort to limit those interruptions and put my phone away so I can be present and attentive to whatever is happening around me. I can always check social media later when I have time to actually be social.

Yes, I know – it’s a novel concept, being social on social media. You should try it. Stop using “like” and start acting with intention. I did it. You can too.

There are many distractions in the world which make social connections difficult. Discretionary technology shouldn’t be one of them. Take the time to disengage from your device. You might be surprised to discover what you can connect with when you disconnect.

Redefining Disability Challenge – Question 39

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the thirty-ninth question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge. Here is this week’s question:

What technological advancements are you hoping to see in the future?

I know technology has made a meaningful difference in so many lives, particularly the lives of those living with disability. Text messaging has increased communication for the Deaf and hearing impaired. Dictation software has made it possible for people with limited dexterity to type and write. My elevating wheelchair seat makes it possible for me to transfer to the toilet. Trust me – that is HUGE when it comes to my quality of life.

While technology has improved my ability to engage in the world around me, I am not waiting anxiously for future technological advancements.

I often see videos with prototypes of new wheelchairs or exoskeletons – devices which will, in theory, make a physical impairment less disabling. When I see them, part of my brain twitches and says, “What is wrong with me functioning as I am? What if I don’t want to interact with the world the same way everyone else does?”

There were times in my younger days when I wanted new technology. In the late 1990’s, I eagerly investigated push-assist wheels as a way to avoid transitioning to a power wheelchair. Once I started using a power chair in 2002, I couldn’t wait to have an elevating wheelchair seat. My first roller-bar mouse in 2007 was an answer to many complaints about the physical pain caused by needing to move my hand off the keyboard to manipulate a mouse, and made it possible for me to continue to type for long periods of time.

But now, I just want the world to welcome me as I am. I don’t want a wheelchair that is able to climb up steps like a tank. I want an entrance which everyone can use with ease – whether they walk or use a mobility device. I don’t want gene therapy to replace my “damaged” genetic material. I want to continue to have access to consumer directed home care in the community, rather than an institution. I don’t want to be viewed as an inspiration for simply getting out of bed and showing up. I want people to expect more from someone with my talents and abilities who just happens to use a wheelchair for mobility.

Redefining Disability Challenge – Question 37

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the thirty-seventh question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge. Here is this week’s question:

Have recent advancements in medicine or technology had any effect on the way you manage your disability?

This may be a question of semantics, but I have never considered “managing” my disability as something I do in my daily routine. Some medical providers talk about “managing” your diabetes or blood sugar, or “managing” hypertension. Changing technology has made it easier for me to function in a world designed for the nondisabled, but I have never defined that as “managing” my disability.

Because I am a word geek, I did what I often do when I am writing. I opened my dictionary and read definitions of “manage.” According to my trusty Merriam-Webster, manage is a transitive verb meaning “to handle or direct with a degree of skill; to treat with care; to exercise executive, administrative and supervisory direction of; to succeed in accomplishing; to direct the professional career of.”

There are other uses as well. As an intransitive verb, manage means “to direct or carry on business affairs; to achieve one’s purpose.”

I have always said I cannot “manage” a progressive neuromuscular disease. I cannot handle or direct with any degree of skill the manner in which my muscles deteriorate.

But, I do strive to treat myself with care. Certainly, I know I exercise executive, administrative and supervisory direction of my life. I have shown success in accomplishing and directing a professional career for two decades. I most assuredly direct or carry on business affairs. I manage my Personal Assistants (PAs) on a daily basis to achieve my purpose of living what I consider to be a good quality of life in a body which does not always function as I wish it did.

Yes, my progressive neuromuscular disease is going to progress as it will. I have no control over it and cannot manage that part of life.

However, I do my best to live a healthy lifestyle, get adequate sleep, eat nutritious food – all things which in theory should help me function at my best. I use technology to my advantage to be as physically active as possible in my community – an elevating wheelchair, an electric hospital bed, a modified van and more.

There is not an approved drug treatment which will slow the progression of my disability. Physical therapy and stretching may help slow the progression of joint contractures and muscle atrophy, but insurance will not pay for continued “maintenance” treatment which is not “restorative.” There is technology which improves my independence. I communicate with my PAs using text messaging, eliminating the need to wait for a return phone call when I am looking for a back-up to help me get in or out of bed. The emergency response alert system allows me to call for assistance with the touch of a button. Yes, I have one of those “I’ve fallen and I can’t get up” bracelets. I don’t wear it, but it is next to my bed should I need to summon help when I am alone at night.

I wrote about “managing” life as a person with a disability last year for the AbleBodies blog. In that post I wrote how I view managing as merely making choices in life.

All of us, no matter our physical ability, are given the opportunity to make choices. However, as a person who requires assistance from others in order to live independently, there is a critical difference in my choices. The distinction, for me and others who rely on caregivers or assistants for help with care, is we always make choices or consciously think about things most people never consider. The able-bodied have the luxury of a life without these choices, a gift taken for granted; and, unless pressed, would never consider these common happenings real choices or decisions.

We all make choices to help us “manage.” Everyone adapts to the abilities they have and makes life decisions for a variety of reasons. I choose to focus on making choices which maximize my ability to engage in the activities which are most important to me. Whether or not anyone else agrees with these choices, they are my choices. It is how I manage.