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.

I Never Said He Wasn’t Being Kind

There’s a photograph making the rounds on social media. Maybe you’ve seen it. A McDonald’s employee performed what the USA Today called a “random act of kindess.” According to the newspaper, the employee (Kenny) shut down his register to assist the customer, an unidentified man using a wheelchair, with cutting his food and eating. The act was caught by Destiny Carreno, who snapped a photo and shared it with her friends on Facebook.

Kenny performed a kind, charitable act. He assisted a customer who asked for help.

I am not denying this. I have received assistance from many people – both friends and strangers – in my life. Each time I am grateful for the blessings these compassionate people add to my world. In fact, whenever I am out in public and something wacky happens (I drop my reacher or find my wheelchair stuck on uneven ground), I am astounded by the speed at which my unspoken prayers for assistance are answered. It’s as if I only have to think, “I could really use an angel right now,” and suddenly help is on the scene. I know from experience most people are kind, and glad to offer assistance.

The photo of Kenny assisting the customer upsets me because of the questions it raises in my mind. When I look at the photo, I don’t see a photo of a kind person performing an act of compassion.

I see a person with a disability who is forced to rely on a stranger to meet a basic survival need, and it makes me angry. I see a man who does not have access to services or supports to assist him in the community. Maybe he does have access to services but we don’t know this because we don’t know who he is.

Did he want to go to McDonald’s and ask a stranger, “Please help me?” What happens when he leaves the restaurant? Is there someone to help him access the bathroom? Can he get into bed without assistance and will someone help him with that task?

If you needed this level of assistance, would you want to rely on a stranger to provide it? And if you did ask and receive such assistance from a stranger, would you want your photo to be published on social media sites as a means for others to have warm, fuzzy feelings?

There is no doubt about Kenny’s compassion or exemplary customer service. Kenny is not to blame in this situation. I am glad this man found kindness from Kenny when making his plea for help. I hope there are more Kenny’s out there who would react the same way upon receiving such a request.

I don’t blame Destiny Carreno, the photographer, for recognizing an act of kindness. I do have issues with photos being broadcast on the internet without permission, although I recognize our expected right to privacy is dwindling these days. I know if someone were to take a video or photo of me receiving assistance without my consent and then share it in a post which received over one million views, I would be upset.

I see the photo and I see ableism. I see inspiration porn. Watch the amazing late Stella Young if you don’t know that term.

I see a nameless wheelchair user who has been turned into the background character in a “feel good” story. I see a symptom of a society which has not yet fully developed and/or funded the supports required for a person with a disability to be truly independent and self-directing without relying on a stranger to meet a basic need.

This man, whatever his name, was hungry and wanted to eat. He had to ask a stranger, Kenny, to help him. Kenny DID help him, which is wonderful.

But do we want to live in a society where those who live with disabilities are forced to ask strangers to help them meet basic needs? As someone who regularly relies on others to assist me with such basic needs I know that is not a society I want for myself, or others.

Sure, praise acts of kindness if you want.

Just don’t forget the reason behind the need for such acts.

 

Redefining Disability Challenge – Question 21

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the twenty first 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:

FREE POST DAY! Write about anything on your mind today. Any topic that the series doesn’t cover, anything going on in your life related to disability, something you’re excited for, something you’re frustrated about.

 

I had a great post planned for today. I was going to write about the 25th Anniversary of the Americans with Disabilities Act. I’ve been spending a great deal of time thinking about that, as I am scheduled to speak about it at our local celebration on Friday.

But then Monday happened. And getting to the event on Friday may not be a possibility.

On Monday, the Electronics Control Unit, or controller (AKA – the brain of my power wheelchair) died. This is not my first power chair, so this is not the first time this has happened to me. My first power chair went through two controllers. My second power chair needed a new controller when it was not even three years old. And again, exactly one year later. And yet a third controller one year after that, before I was eligible to buy a replacement chair (because the insurance companies only pay for a new power wheelchair every five years).

I have had my current chair for exactly three years. Well, three years and one week if you really want to be specific. And now, just like the prior chairs, it is dead.

Not completely dead. Just in a coma, waiting for a transplant at my local wheelchair repair shop like a terminal patient watching the clock for the replacement organ to arrive.

You can install a new controller and revive the chair. Well, maybe not YOU. Bob, my amazing wheelchair repair tech, can install it. But, first the part has to be ordered. Then it has to be shipped. And then it has to be installed. And even though I can get from Albany, NY, USA to Hobart, Tasmania, Australia in thirty six hours, it may take up to a week for this little controller to get here from wherever it is at this very moment. And Bob is on vacation this week – a vacation he did not have my approval to take! The other guys in the shop are good, but they aren’t Bob.

The part has been ordered, but my wheelchair repair shop has no estimate as to when it will arrive. The second controller on my second power chair died on a Monday night while I was in Grand Rapids, Michigan, for the Ms. Wheelchair America pageant in 2011. The replacement controller was ordered on Wednesday morning and arrived on Friday morning. I was back in my chair at 2:30 PM Friday afternoon. So, things can happen quickly in the world of wheelchair repairs. I just don’t know if they will happen quickly this time.

In the meantime, the shop has given me a crappy, old Permobile as a loaner. I say old because it is battered, bruised and banged up. I say crappy because IT’S NOT MY CHAIR!

Allow me to illustrate what it is like to use a chair other than my own. Imagine you woke this morning with a new pair of arms and legs – say the ones belonging to your neighbor. Your neighbor is a different height and weight, so her arms and legs will not fit your torso appropriately. They will not react to the impulses you send down your nerves in the same manner as your own limbs. If you walk, your gait will be unsteady and your balance will be shaky. When you reach for objects, you will need to remember your new replacement arms are not the same length or strength as YOUR arms. You will use muscles you don’t normally use just to maintain an upright posture. You will be fatigued just from trying to do your typical morning routine. Nothing will feel right.

Nothing IS right. EVERYTHING is wrong.

Here’s a list of why I am currently miserable. Yes, this may include more personal details than you ever wanted to know about me. But to really understand how important someone’s assistive technology is to their quality of life, you need to sometimes see the ugly truth about the reality of disability.

• I cannot transfer in or out of this chair independently, so I cannot get in and out of my van. This means I cannot leave my house to go to work, or any other location. Sure, I can wheel from my bedroom to the dining room. And if there were a fire or an emergency, I could get out the front door in this chair. But I cannot leave my house to go to work. And I only have five paid days of time off left since I took a two week trip to Australia three months ago.
• I do not fit under my bathroom sink to brush my teeth. I have to use a spit cup. I hate using a spit cup. I feel like I’m in a hospital.
• I cannot sit comfortably at my computer desk at home and I am in pain from trying to type for an extended length of time in an awkward position.
• I cannot reach up to brush the hair back off my face because my arms are too weak to lift up without balancing them on the arm rests, but the arm rests on the replacement chair are not long enough for me to prop up my elbow so I can reach my brow. I also cannot brush the back of my hair because of the stupid armrests, but also because the back of the chair is WAY. TOO. HIGH.
• Have I mentioned the pain and discomfort? My back has been in agony since around 10. My shoulders have been burning since 2. It is 6:15 PM Tuesday as I write this. I am stuck in this torture for another two hours. And tomorrow it begins again. I have some prescription medications left from an injury earlier this year, but I am not functional if I take them. I am already impaired enough being out of my chair. I am hesitant to add chemical alterations to the mix.
• This chair does not have swing away foot pedals. It has flip up foot plates. Except, because it is old and banged up, the right foot plate does not flip up completely. So, when my Personal Assistant (PA) tries to help me transfer out of the wheelchair, the foot plate digs into the back of my right leg, essentially knocking it out from under me as I try to stand.
• This chair is a front wheel drive chair, which means the drive wheels are located in the front of the chair, under my legs. My chair is a mid-wheel drive chair, which means the drive wheels are in the middle, directly under my seat. The two chairs perform very differently. I feel like I am fish-tailing constantly, and I have no idea where my “back end” is as I rotate. The turning radius is larger, which means I have almost ripped out my bathroom sink and doorway multiple times. And this chair has two ‘anti-tip’ front caster wheels in front of the drive wheel which supposedly help it drive over thresholds and obstacles, but in reality get in the way of anyone attempting to perform a stand-pivot transfer. This is how I get in and out of the chair. If my PAs manage to get through this experience without tripping over the wheels, it will be a miracle.
• Transferring in and out of the shower is exhausting, because I don’t have my chair to lean on as I shift and move on my tub transfer bench. My PA has to assist me with every movement, which means it takes me twice as long to get into and out of position, and twice as much energy.
• Because I cannot transfer in and out of the chair independently, I need assistance for EVERYTHING! Getting on and off the commode, cleaning up after using the commode, getting off the commode. I don’t have MY chair to use as a leg rest while sitting on the commode, because this chair does not have foot pedals, so I am unable to balance and wipe myself. Thank goodness I don’t have my period this week. The last time the controller broke on my chair – that time I was in Michigan? Guess what arrived the day AFTER the chair broke?! When was the last time you let someone else wipe you, those of you who don’t need assistance with it on a daily basis? I have had others help me with this task before, and I will need to have them help me again in the future I’m sure. But even if they do it well, nobody does it the way you do. Try for yourself tomorrow. Have someone else perform this task for you and let me know how many wipes you go through. P.S. Baby wipes are quite possibly the best invention. Ever. I use Huggies Simply Natural in case anyone wants to drop some off. And no, I did not get paid to endorse them.

Monday, as I was waiting for the diagnosis on my chair, my best friend sent me a text which read, “You are the luckiest girl on earth!”

My response to her? “Some days I am. Even if I don’t feel like it right now. Thanks for reminding me that I am!”

Yes, this sucks right now. There is no other way to say it. It’s terrible, and it isn’t going to get better for several days. I am exploring options with the wheelchair repair company (new batteries for my old chair may be a possibility) but until I get MY chair back things will just be bad. I will be short tempered. I will snap at those who care and try to help. I will apologize because I know they are acting out of love and concern. I will write gratitude lists daily – I’ve written three so far today!

Because I AM lucky. My chair broke as I was returning home from a long weekend away with family. I was able to get it to my local repair shop, instead of being stranded out of town, or out of the country, without a chair. I have a roof over my head, food to eat and a clean bed to sleep in. I have some loyal PAs, friends and family who have reached out with offers of assistance. I have an understanding employer who is letting me do some work from home as I am able. I live in a country where replacement wheelchair parts are available, even if they aren’t here instantaneously. I have virtual friends and readers who let me use this week’s challenge as an opportunity to vent, and be less optimistic and cheerful than usual.

I put on a good front. I appear confident and outgoing in my professional life. But the reality is, all of us who depend on complex technology for our independence and life are one accident, one breakdown, one illness away from total dependency and isolation. Maybe I needed the reminder so I would realize how easy life was last week when all I was worried about was hiring new PA staff.

Because, oh yeah – I’m still hiring.

And if anyone has a spare Invacare controller they have no use for, I’ll be at home for at least the rest of the week.

Redefining Disability Challenge – Question 19

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the nineteeth 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:

In what other ways are your interpersonal relationships affected by disabilities? — Examples might be that it’s harder for you to form or maintain relationships or that people treat you differently once they realize you have a disability.

This question may be easier to answer for people who acquire their disability later in life. As someone who has lived with disability her entire life, ALL of my relationships have been impacted by disability. Disability is one of my central identifiers.  Even if I don’t want to admit it, my mobility impairment shapes everything I do. I’d like to take today’s question as an opportunity to discuss how my disability impacts my ability to interact with friends and family.

My use of a power wheelchair for 100% of my daily mobility makes it nearly impossible to socialize with my friends and family in their homes. I can visit my sisters Susan and Sandy during summer weather when we can sit outside, but I don’t visit them in winter because I can’t get in their houses due to steps. I rely on my best friend to visit me because her apartment has narrow interior doors and steps. I am connected to 749 people on Facebook. A rough count revealed 180 of them also use wheelchairs, leaving me with 569 ambulatory friends. Of those, 32 are living with people who use wheelchairs so that brings the total down to 537 people. Of those remaining 537, I can identify six people who own or rent a house I can enter. I meet friends out at restaurants, parks or other public spaces because I cannot access their homes. Or I am limited to see them when they can come to me.

I am not trying to make my loved ones feel guilty. I provide these facts as examples of how my disability influences my ability to freely socialize and visit with the people I care about the most. The majority of friends and family in my circle of support do not live in accessible houses, or even houses which are visitable.

What is a visitable home? A visitable home includes three basic accessibility features:

1. An entrance without steps
2. Wider interior doorways and hallways (32 inches for doorways, and hallways of 36 inches)
3. A bathroom on the main or ground floor level with sufficient space for a wheelchair

Think about your own home. If you woke up tomorrow and were unable to walk, would you be able to function? Could you access your bathroom? Would you be able to turn on your lights and adjust your heat? Or are the controls mounted so they are only accessible to people who are standing? Would you be able to enter and exit your home without assistance? As you age and become less independent, will you be able to remain in your current residence or will you be forced to move? Would I, or another wheelchair user, be able to get in, go pee and get back out?

Visitabilty allows people, homeowners and visitors, to live and age in place without having to make significant accessibility alterations to their property. When my sister Caroline and her husband Paul built their current house, they incorporated visitability into their plans. They also included these modifications:

• A ramped entrance
• Lever door handles
• Grab bars next to the toilets (which are 19 inches high)
• Pedestal sinks in the bathroom
• A roll-in shower stall

While these features do not allow me to function independently, they do allow me to visit and stay at their house with assistance.

Some of these modifications were not in the original design, but as the house was being constructed Paul was seriously injured. After a lengthy hospital stay, he spent six weeks recuperating in their former home with the use of a wheelchair. His experiences helped shape the changes which they implemented. All of a sudden my suggestion for pedestal sinks in the bathroom, which were not included in the original plans, seemed like a smart idea. Caroline has told me if they were to build again, she would make even more changes to improve accessibility and functionality.

There is a growing international movement to improve communities by making all new homes visitable. Several communities and municipalities in the United States and Canada have enacted policies and regulations which require all newly constructed homes to meet the three basic visitability standards. You can learn more about Eleanor Smith, who began the movement in the United States, by clicking on this link for the Concrete Change website. You will find resources and construction guidelines, as well as information on the history of the movement. You can also learn more about what is happening in Canada at the VisitAble Housing Canada website.

Many times, people talk about access as it applies to others. But a temporary or permanent illness or injury resulting in disability can make an issue become personal, or “hit home.” And when a person’s home is a barrier to inclusion in their community or full participation in the activities they enjoy, they can withdraw and face isolation.

I am grateful to my sister and her husband for thinking of me as they designed their house. I wish Paul did not have to endure an injury to gain first-hand disability experience, but I appreciate the insight he developed as a result of viewing the world from a seated position for a short time. I hope as visitability continues to grow, my ability to engage with friends and family in their homes also increases. I bring my own chair so I’m an easy guest!

 

Redefining Disability Challenge – Question 18

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the eighteenth 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 you experienced preferential treatment because of disabilities? Preferential treatment means situations where you were treated better or differently from your peers even though there was no valid reason.

Yes – there are “disability perks.” And whenever I can, I work them for all they are worth. These may not be considered “preferential treatment” but they are definite advantages I would not have if I didn’t have my disability. In random order, here is my list of ten disability perks:

1. I (almost) Always Have Parking

Yes – it’s obvious. But I know I never have to worry about parking out in no man’s land when I go to the mall. Even at holiday time, I know I can find accessible parking. You walkers will just have to park waaaaaay at the end of the lot and dodge the crazy drivers on your walk in. Now, there may be times when I need to park in a smaller lot and someone has already taken the accessible space. However, parking is something I usually don’t have to worry about.

2. I Never Have to Do the Dishes

I am the youngest of six sisters. When we get together at my parents’ house for holiday meals or family celebrations, we put the extra leaves in the table to accommodate the sisters, brothers-in-law, nieces and nephews. The extra table length prevents me from accessing the kitchen to help wash all of those dishes we create during our meals. So, my family members get stuck with clean up and I get to play cards with my nephews. Being the “baby” has perks.

3. I am Never Asked to Help Friends Move

Let’s face it, my ability to do heavy lifting is limited. So, when friends need to pack boxes and carry them somewhere, I am never asked to pitch in. I have used my van to help transport their belongings, but that does not involve manual labor.

4. I Always Have a Comfortable Seat

Waiting in line; watching a parade; enjoying a concert – I know I always have a place to sit and I know the seat will fit my frame. I think I remain on the invite list for Thanksgiving dinner at my sister Caroline’s house because I bring my own chair. All of the other chairs are taken, which makes me wonder if I’d be encouraged to start bringing my own chair if I didn’t already do so.

5. I Get to Board First

Have you flown Southwest or any of those budget airlines with open seating? Seats are available on a first-come, first-served basis. If you are in the group which boards last, good luck getting an aisle or a window. But if you use a wheelchair, you board before everyone else. Which means I always sit in the very first row, in the bulkhead, with lots of leg room. If you’re nice to me when we are waiting to board, I may tell the flight crew you are my companion, which means you get to board with me.

6. Sometimes I Get to Go Backstage

Older buildings weren’t built or designed with wheelchair access in mind. So, there are times I need to use a back door or alternative path to gain access. When my friend David and I toured the White House, we got a sneak peak at the kitchens. I’ve actually seen MANY kitchens in my quest for access. Few were as clean as the White House kitchen.

7. Occasionally I Get an Upgrade

In 2006 I went to visit my friend Crystal in Nebraska. One of my planes was a small regional jet, and due to a delay I was late in boarding. Rather than move already seated passengers, I got to sit in the empty first class compartment.

8. I Gained Public Speaking Skills at a Young Age

I first appeared on television when I was eight years old for a local broadcast of the Muscular Dystrophy Association Telethon. Say what you will about their use of pity to raise funds, but my involvement with them as a child taught me how to behave on camera, how to interview, and how to speak extemporaneously in front of an audience. These are skills I continue to use in my career.

9. I Never Have to Worry About Blending In

People notice differences, so whether or not I want attention, I will be seen. You will easily spot my shiny red chair. But if I want to be remembered as more than just a chick in a chair, it is up to me to make sure you remember more than just my chair.

10. People Think I’m Nice

And for the most part, I am. But I can be a tad bit wicked sometimes, and I like practical jokes. Somehow, this naughty streak surprises people. At least, those who don’t know me well. Perhaps they don’t think the chick in the chair can be naughty. Little do they know….