Out of the Mouths of Babes

Friday night was special. I spent the evening with family celebrating my great niece’s seventh birthday. Seven is a fun age, and her party was packed with things a seven year old girl would enjoy – pizza, new clothes for her doll, and a three layer cake covered with pink frosting and chocolate chips.

One of the reasons I enjoy family events is because of the laughter and love we share whenever we are together. Emily, the birthday girl, and her younger brother Evan who is four years old, kept us smiling all night. But it was an exchange that happened early in the party that continues to play in my head.

I was sitting with my sister Sandy when Evan approached us. Like most children, Evan is intrigued by my wheelchair. When he was younger, he was content to simply ride on my lap. Now he is determined to figure out how the controls regulate the various aspects of my chair, such as speed and seat elevation. Standing next to my chair, he displayed remarkable restraint keeping his hands at his side rather than reaching for my joystick. Suddenly, he turned his quizzical gaze to Sandy and this delightful interchange took place.

Evan: Aunt Sandy, where’s your wheelchair?

Sandy: I don’t have one.

Evan: Why not?

Sandy: Because I don’t need one yet. Maybe someday I’ll have one.

Evan: (looking delighted and excited, and clapping his hands) Then you’ll be twins!

The three of us laughed as Sandy picked up Evan for a hug. The party continued, with pizza, presents and cake. But Evan’s comments stuck with me and caused me to reflect as I boarded the bus to go home.

At four years of age, Evan already knows that a wheelchair is a cool piece of equipment. He does not view me with pity. He does not perceive a wheelchair or a disability as being a Bad Thing, with a capital b and capital t as said by the late, great Stella Young. Of course, he doesn’t understand all the intricacies of life with a disability because he is just four years old. But he understands critical information other nondisabled adults seem slow to grasp, such as:

  1. I am my own person.
  2. My wheelchair is not the worst thing in the world, or a reason to shy away from me.
  3. I do not have a poor quality of life.
  4. I am capable and competent.

Evan is not unique in his abilities. All of my nieces and nephews, and now their children, have been exposed to my wheelchair and my disability their entire lives. They have all developed a level of disability cultural competency through their interactions with me, a disabled family member. This has created a level of comfort with disability at a young age in many of them which their peers may not have developed.

When I am with my young family members, I don’t hear negative comments about disability. I don’t hear pity. I don’t hear insensitve or ableist comments like the ones I hear from strangers on a regular basis, such as:

You manage that thing pretty well!

Slow down – you’ll get a speeding ticket!

You got snow tires for that thing?

You’re so pretty for someone who uses a wheelchair.

Oh, you work?!

And my personal ‘favorite’…

I don’t know how you manage. If I had to use a wheelchair, I’d kill myself.

My young family members who have been exposed to my reality as a disabled woman say different things. They say things like:

That man has a red chair like Aunt Denise’s!

Maybe you could drive us to skating when you get your new van Aunt Denise.

Will you read to me Aunt Denise?

We put the ramp down for you Aunt Denise!

And my personal favorite…

I love you, Aunt Denise.

If my young nieces and nephews can understand disability is not the worst thing, why can’t more adults figure it out?

Advertisements

Why I Have Not Written About Japan

On July 26, a day when I should have been celebrating the anniversary of the Americans with Disabilities Act, I was attempting to process the news of an unimaginable hate crime. Instead of gathering with my disabled peers in joy, I was sobbing as I imagined what the victims had experienced during and after the massacre in Sagamihara, Japan.

You haven’t heard about the massacre? I would bet you aren’t the only one.

Around 2:20 AM, a former employee of a residential facility for the disabled in Sagamihara committed the largest mass killing in Japan since World War II. He broke into the building, tied up the staff members, and stabbed the disabled residents, killing 19 and injuring 26. The victims ranged in age from 18 to 70, both male and female. Most were stabbed in the neck. throat, and chest as they slept in their beds.

I waited for the “mainstream media” to cover the story. After all, hate crimes and terrorist acts have been receiving a great deal of attention. Nice, Brussels, Orlando, Paris, Munich – I’m guessing you recognize recent stories related to these places.

Instead, I read stories like this Japan Times article which described the crime as a “mercy killing.” According to the article, the killer believed he was providing mercy to the victims’ caregivers because “it would be better if the disabled disappeared.”

There was no mass outcry of horror and disbelief. There were no large expressions of sympathy and solidarity.

Then, slowly the messages began to come from the worldwide disability community as they wrote social media updates, blog posts and essays. Reading them, I was grateful for these brave writers who took the time to capture the loss, rage, sadness and fear so many of us felt. I was able to share their work when I lacked the energy and stamina to compose my own response to this terrible act.

I tried to write. I attempted to find words to express my emotional response. If ever there was a time when I needed to add my voice to help draw attention to an event, this was it. But whenever I tried, I got stuck in the same mental prison.

Those nameless victims? They were me. If I had been a resident in that facility, I would have been one of those who went to sleep one night in July only to have my throat slashed while trapped in my bed, unable to escape injury or death.

The victims’ only crime – my only crime? Being born disabled. Less than. A burden. Incompetent.

Murders of disabled people are incorrectly called “mercy killings” by media outlets because of the ableist belief that disabled lives are so invaluable or unbearable that our murders are acts of mercy. Don’t believe me? Remember Tania Clarence – the mother who killed her three disabled children and was only charged with manslaughter? I wrote about the case in this post. How about the mother who received a charge of involuntary manslaughter for VOLUNTARILY poisoning her disabled daughter and killing her? If the victims of these crimes had not been disabled, would the charges have been more severe?

Writing about the massacre has also been difficult because my own personal care situation has been strained for the past month. Last summer – almost exactly a year ago – I wrote about how life is different when personal needs are met. Just this past month, I have had two Personal Assistants (PAs) out of work for hospitalizations; one out due to a broken foot; one out due to complications with her pregnancy; and one out due to a family emergency. These are legitimate reasons to be absent from work. But my need to use the toilet, get dressed, eat, get in and out of bed, work, live – insert action of your choice here – does not stop just because I do not have my regular staff available to work for me. Yes, I have other staff but they are not always available to work at a moment’s notice. If it were not for the support and assistance from family and friends, I would have no choice but to rely on institutional care like my disabled peers in Japan.

Facing a crisis in personal care, knowing that I would be institutionalized without the generosity and kindness of a support network I have carefully cultivated, and reading about the murder of innocent disabled people in a setting where they should have been safe – well, writing has not been a priority in my life. It is a shame, because I need the therapeutic outlet of writing even more when I am stressed and emotional.

I really need to write. I am a writer – and writers need to write.

So, I set a goal to post something – anything – about Japan this weekend. I am not certain this post captures everything I want to say about it, but at this point it is the best I can do. To the friends and family who have reached out to me since the tragedy in late July, I appreciate your kind words. Thank you for sharing stories and for helping to call attention to this tragedy. We owe it to the victims to continue to fight against the stigma and negative attitudes towards the disability community. We must ensure all life is valued, so nobody has to fear that society views their life as a burden or expendable.

Because that disabled person trapped in an institutional bed? That person is not just me. It’s you.

I Want To, But…

I want to write about so many recent events and their impact on my life, like the brutal murder of 19 disabled people in Japan and Jerika Bolen’s desire to end her life, but I don’t have the energy to write anything which can compare to what others have already shared.

I want to celebrate my most recent rehabilitation victory (I transferred out of my driver’s seat into my wheelchair ALL BY MYSELF for the first time since January’s femur fracture this past week – three times!), but I am too busy trying to find Personal Assistant (PA) staff to help me get out of bed in the morning to be excited over this accomplishment.

I want to attend meetings, events and parties, but I do not have PAs available or healthy enough to work the hours I require so I can be an active member of my community this week.

I want to make plans to have fun this weekend, but I will be working on Saturday and Sunday to make up for the work time I have missed this week due to lack of PA staff.

I want to watch some of the Democratic National Convention tonight, but I will have to shower instead because I don’t yet know who is helping me get out of bed tomorrow and if they will have time to help me shower in the morning.

I want to be a more productive employee and deliver the quality my employer has come to expect from me, but meeting my basic needs is requiring time and energy which is normally devoted to work.

I want to travel, but I am forced to put those plans on hold because the only bathroom I can use is in my house.

I want, I want, I want.

But, what do I really need?

I need to remember there are people who are willing to help at a moment’s notice, and who come when called so I can get out of bed (thanks Stacey!).

I need to be grateful for my accessible vehicle, when so many are unable to access their community due to lack of transportation.

I need to share the great pieces written by disabled authors and advocates I respect, so others can learn how ableism threatens disabled people and understand the violence disabled people everywhere face.

I need to thank my employers – current and previous – for recognizing my unique needs and granting me the reasonable accommodations which make it possible for me to remain employed full time for twenty years, unlike 80% of disabled people of working age in the United States.

I need to find patience while telling myself this too shall pass, and do my best not to stress over things beyond my control.

And I need to congratulate myself for completing a goal, and posting a new post in the 38 minutes of free time I had alone today.

Not only that, but now I know who is helping me get out of bed tomorrow. Although I’m still going to shower tonight in case something happens…

Photo of a woman in a wheelchair holding a poster board sign which reads "My Buns Matter Too!"

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.