In these days of COVID-19, many of us we’ve realized how technology has kept us connected to each other and to the services we need to survive. I, for one, have two virtual cocktail hours each week with different groups of friends as well as ad hoc Zoom meetings with different friends. Funny how we’ve agreed that we see each other more now than before. Technology gives us a sense of control over our lives. We take for granted the independence we have of calling who we want when we want, shopping wherever we are, or being entertained or getting news at our fingertips. We consider our smartphones and laptops essential to our living our daily lives. But when something happens to those technologies, something visceral happens. We sweat with anxiety, the fear of missing out (FOMO) is felt with a swiftly beating heart, and not being able to get in touch with our family forces our reptilian brain into fight or flight reaction thus clouding our judgment and shutting off our executive functions. That reaction is the same whenever we lose our autonomy. No wonder we feel so anxious sheltering in place and being cut off from our sense of autonomy.
So it’s no surprise that there is little we do to prepare ourselves for losing any of our independence. All of the challenges associated with that could take down even the strongest of wills. It was frightening to me when I started to lose control of my limbs. As my sense of control was being chipped away as the disease kept killing the cells that were the communications link between my brain and my muscles, I started hustling to compensate so I can keep as much of my sense of autonomy as possible. It didn’t take me long to decided to take on the challenge of finding ways to keep me productive. Being a techno geek and early adopter of new technologies over the years, my natural instinct was to seek out technology to help me stay connected and engaged. Hell, I still have my first mobile phone that came in a small satchel, a MacBook 100, and got a Masters degree in educational technology when very few heard of the term and we were shoving 4.5″ floppy disks into Apple One computers.
The first to go were my legs. Like many others who’ve lost the use of their legs, I held out for a Permobil power wheelchair. The cost of the chair is about as much as a car. (Before ALS, I had my heart set on getting a Tesla. I decided that I did get my electric vehicle after all.) I was told that the insurance would pay for only one wheelchair and am glad I held out. It moves through most terrain, the seat is multifunctional and for quite a while, I was controlling it myself using a joystick. I’ll talk more about my chair a little later on.
My next shift in technology happened when it was getting harder me to type on my laptop given I was losing control of my fingers. I needed to find another way to write. I did some research and found that my Android phone was capable of pairing with a compatible trackball mouse. I had enough dexterity in my thumb that I could compose emails and texts on my phone. I then decided to start my blog. I found a service (WordPress) with both Web and mobile interfaces and started composing my posts on my phone using the blog’s mobile interface. At first, I was writing pretty quickly, then my thumb started stiffening, but I forged ahead regardless.
When I finally went on full disability and left work, I had to return my laptop and phone since they were company property. I had to purchase a new phone and laptop. My first instinct was to get another Android phone. I was against getting an iPhone because my last job with Apple was so traumatizing that for many years I stayed away from Apple products. The only thing that changed my mind was when a friend told me that the new iOS on the iPhone had voice control. I researched it and found it could be very helpful given I was losing control of my arms, hands and fingers. So I had to let go of my anger with Apple as an employer and bought an iPhone. Despite my misgivings, the iPhone is extremely helpful. Using my voice, I’m able to make and answer phone calls, write texts, answer emails, and use any app I want. I was able to continue working on my blog as well. But true to form, there are issues too. I’m not able to hang up on calls because the voice control function is shut off during a call so I can’t tell it to hang up. I rely on the caller to hang up or, if it goes to voicemail, I have to wait until the system hangs up. Other restrictions are when I call a company and am required to use the keypad to choose a number, I need to ask someone to touch the keypad for me. Despite those problems, my phone is incredibly helpful.
Next, I had to replace my laptop since I had to return it to my employer. Coincidentally, at the same time I was considering which laptop to get, we visited the speech therapist at the ALS clinic. She recognized the extent of my progression and introduced me to eye gaze technology, called the Tobii Dynavox PCEye mini. In order to use it, I needed to buy a Microsoft Surface Pro tablet computer. I was reluctant to buy the eye gaze technology, thinking I didn’t need it at that time. Mary Ann was insistent that I needed it then. I held back until it became clear to me that it would be useful. (So full credit goes to Mary Ann for her persistence in buying it.) With the Surface Pro and the combined Tobii eye gaze technology, I can do almost everything I need to on a computer. The eye gaze technology provides me two things, a virtual mouse and a keyboard. The virtual mouse allows me to right click, left click, drag and drop, and scroll. The keyboard provides a QWERTY format, key functions, etc. Between both of those, I can surf the web, scroll through pages, conduct searches, buy stuff, and anything else I want to do. I mentioned before the last few of my blog posts, including this one, were done solely with eye gaze technology including adding images and formatting text.
Returning back to my wheelchair, the technology I just described will have a significant impact on my ability to control it. When I lost the ability to work the joystick which allowed me to drive and adjust my chair independently, I felt helpless and nervous because I was now completely dependent on others. In desperation, I started to research what adaptive technology might be out there that would use eye gaze to allow me to manipulate the chair independently once again. I landed on a site that represented a charitable organization founded by Steve Gleason, a former football player from the New Orleans Saints who now has ALS. (As it turns out there is a higher than normal percentage of football players who are diagnosed with ALS.) Gleason’s foundation supports ALS patients by funding the purchase of adaptive technology to help them become more independent. It turns out Gleason challenged a team of software engineers to develop something for power chairs. That’s how I found out about the Independence Drive. It’s a drive system for my chair that is integrated with my eye gaze technology. (For the geeks, it uses an Arduino switcher that receives commands through the chair’s computer module from the eye gaze software to tell the chair what to do.) Below is an image of what the screen looks like that allows my eyes to tell the chair which direction to drive or to move my chair seat. I look at one of the directional icons and the chair drives in that direction. It also uses the same icons when adjusting the positions of my chair. The real benefits are that I no longer need to ask Mary Ann to adjust my chair for me and I can drive myself to and from the bedroom and outside and back from my backyard. The only issue is, when in direct sunlight, the eye gaze component can’t track my eyes, so it stops working and I am back to being dependent again. I understand that I may be one of the first in the Bay Area who has this capability. I truly am grateful for this technology since it provides a new level of independence.
I’ve always been interested in technology and usually am not fearful of being an early adopter. Given my situation, I researched how to control appliances either by voice or on my computer using eye gaze technology. I found through the use of “smart home” technologies, like WiFi capable light switches and plugs that work with Amazon’s Alexa was. Many of these switches use a protocol called WEMO, though other manufacturers may have their own. I installed smart light switches in three rooms, and now I ask Alexa to turn on or off the lights in those rooms and voila, it happens. Then I plugged in the WiFi wall plugs and plugged my TVs into them. Now I just ask Alexa to turn a TV on or off, she does it and politely says “okay.” Now, mind you, I have my arguments with her, especially when I ask for something and she gives me something different. When that happens, I call her all sorts of names, only to come back and tells me she doesn’t understand or can’t do what I ask. She does have a sense of humor, though. If you have the right skill enabled, you can ask her to pull your finger and she will shamelessly oblige.
The next problem to solve was replacing a physical remote with a virtual one, either for the TV or Bluetooth devices. When it came to the TV remote, I had seen an ad by my cable provider, Comcast, that they were just released a web-based virtual remote for the disabled. You can see an image of it below. So now I ask Alexa to turn on the TV, then use my virtual remote to change channels, access Netflix or Prime, search for movies, and play and pause movies. The limitations are that it won’t adjust the volume or turn the TV on or off, which I’ve already solved.
And speaking of Alexa, I have her playing radio stations for me, one function being an automatic wake up playing the radio at the same time every morning. She also reads my Audible books (I also read my Kindle books on my tablet using the Kindle app to open the book and turn the pages with eye gaze), plays podcasts, plays music through my Sirius XM and Spotify accounts, and even finds our phones when we lose them in the house.
I don’t want to leave out the handiness of Bluetooth. Through my computer, and my phone, control Bluetooth devices. One example is my outdoor sound system. I have an inexpensive Bluetooth amplifier attached to a pair of speakers. I connect to the amp either through my computer or my phone and then play my music using my music services. Along with that, I also put up a movie projector screen and now have movie nights in my backyard.
My heightened respect for people with disabilities who take initiative to make themselves independent and live full lives is what inspires me to look for ways to be independent, productive and find joy in each day. That is one reason watching Crip Camp was so inspiring. Mind you, I am not a lifelong person with disabilities and don’t want to come off as a true member of that tribe. I’ve had huge advantages over my lifetime others never had. My heart goes out to those who came out of Crip Camp because I never had to deal with isolation, ridicule, lack of friendships, obstacles, and educational opportunities. A true inspiration is my friend from the movie who fought for and pioneered the civil rights for the disabled to be treated like any other citizen, deserving accommodations to make them truly productive, which the majority are today.
To my readers, you can extrapolate my message to apply to any community whose rights have not been fully rendered. Supporting them and their cause can truly blossom into more independence, integrity and respect. I’m fortunate to not have experienced any overt discrimination, (except for those who park in the van accessible handicapped spaces, more like a first world problem), I feel I sit on the shoulders of giants who came out of a supportive, respectful environment to go and change the world. I’m asking you to let go of fear and xenophobic attitudes and get to know someone who is disabled, and their caregiver, if possible, to better understand their lives. Another way is to donate to an organization that supports the disabled like (shameless marketing plug here) the ALS Association.
More to come…