February is just too busy

Hello all. Sorry it’s been so long. February is full of way too many year end things, so I haven’t had time to finish any of the posts I’ve been working on. I am going to post a couple of things I found while (not) working on my year end reports.

Ableism is something that gets overlooked. Want to learn more about it? Here’s a get blog that explains it. I hope you enjoy.

Ableism what the heck is it

Just click on the text above to go to the blog post.

On Speaking without Thinking: Part 2, Discrimination, Privilege, and Caretaking

Whether you’ve just finished reading Part 1 for the first time, re-read it to reacquaint yourself prior to reading this one, or you haven’t read it yet because you like to do things backwards, here’s a short recap of the highlights most relevant for this post.

Remember Bob?

Bob is just an average guy. He works hard but often doesn’t think about what he’s doing.

Bob’s job at a specialty neurology clinic has him dealing with people all day. He’s worked there for so long he runs on autopilot. He says the same things to everyone without paying attention to their differences.

Bob: “Hello. What’s your name? Which doctor are you seeing today? Have you been here before? Photo ID and healthcare card.”

Bob doesn’t really look at patients most of the workday. When he does bother to look up from his computer he still doesn’t see who he’s talking to. He just sees a blur of people like this:

He tells everyone, even wheelchair users, the same thing:

“Please take a seat in the waiting room until your name is called. Thank you.”

This is what I call telling without thinking. It’s when you tell someone to do something that doesn’t make sense because: they can’t do it; it’s such an obvious instruction it makes them appear stupid; or it’s an instruction meant for someone else. It’s a way of dismissing people. It shows a lack of thought, compassion and empathy towards them. Essentially, it dehumanizes them, making them less than human.

Telling without thinking

Bob says a lot of things without thinking. In fact, he even tells people to do things they can’t do at all, or they are already doing. He says things that are obvious but yet missing needed context. This is aggravating and dismissive, yet people do it all the time. One of the best examples is heard constantly in waiting rooms:

“Take a seat,” or “sit down over there.”

I’m sure Bob is thinking: “what’s wrong with that? I say it all the time.”

Inaccessibility

Well Bob, those of us who use wheelchairs are already sitting. We brought our seats with us. If you bothered to glance up from your computer, you’d see that. I’m not going to take a seat or sit down over there. I’m going to wheel over and try to find a space my chair fits in that isn’t blocking a door or hallway. This is a task that is impossible in almost every waiting room I’ve ever been in (and I’ve been in a lot).

This is an example of how medical clinics are often not accessible. Even those who see a lot of patients in chairs don’t make space for them in the waiting room or patient rooms. Nor do they educate staff to speak appropriately. For example, instead of telling me to do something I’m already doing, Bob could say:

“Find a spot in the waiting room please;” or simply “wait over there please.”

Either of these can be said to anyone. When a clerk said it to me for the first time I was shocked. I couldn’t figure out what was so different. I hadn’t really thought about how wrong the other phrases were, or how they dismissed me and my reality. It wasn’t until hearing an inclusive form I realize how much the usual way excluded me.

I thought about it the whole time I waited for my doctor. When I was leaving I asked the clerk if she had learned to use the phrase in a course on inclusion. She said no, she had been confronted by a woman in a wheelchair who was irate.

The wheelchair user explained to the clerk how the wording she used excluded wheelchair users. In addition, it demonstrated she hadn’t even looked at who she was speaking to. Had she looked, it would have been obvious her words were inappropriate.

The clerk had taken what the woman said to heart and resolved never to make that mistake again. Instead of getting defensive because she didn’t mean to discriminate, she listened and accepted that she had. Whether intended or not her words offended. Just because other chair users hadn’t said anything, or perhaps even recognized it as discrimination, didn’t mean it wasn’t discrimination. It was.

Discrimination

It is hard to accept things we’ve always said discriminate. It’s even harder to accept we have discriminated. There is a gut reaction to the word discriminate. We have misconceptions about what it is and who does it. It’s something terrible people do, I don’t do it. It’s something people in pointy white masks do. It’s vile and intentional. If I didn’t mean to offend or discriminate it can’t be offensive or discriminatory. NOT!

I mean, yes all of those things are discrimination, or discrimination can be all those things. But those are only one extreme side of it. We discriminate in much subtler ways too. It’s the subtle ways that are a bigger part of discrimination, and frankly, a bigger problem.

Systemic discrimination is the biggest and most common form of discrimination. It is insidious, often appearing as stealth discrimination. Stealth discrimination occurs when only the person or group being discriminated against recognizes it as discrimination.

The biggest problem with systemic discrimination is that it’s embedded in society. It becomes part of the way things just are. We believe someone who is offended just needs a thicker skin. They are too touchy. It’s their problem, not ours. They should get over it. We didn’t mean anything by it.

The reality is if one person mentions it many others think it. Just because someone in the marginalized group accepts the way things are doesn’t mean it’s not discrimination. That acceptance is so pervasive it has a name. It’s called hegemony. Hegemony is used to subtly teach marginalized groups to accept the dominant (discriminatory) position. We need to start recognizing this if we truly want to live in a less divided world.

The roots of all forms of discrimination are systemic and they run deep. It’s not their problem, it’s our problem. They don’t need to get over it. We do. The first step in breaking down these barriers is to admit our failings. We do this by:

  1. Accepting it when someone calls you on something discriminatory;
  2. Stop and listen to them;
  3. Acknowledge their points;
  4. Apologize;
  5. Think about what you’ve said or done;
  6. Try to empathize with the person that confronted you;
  7. Learn from it and don’t do it again; and,
  8. Most of all, don’t blame them for your failure.

We all fail when it comes to systemic discrimination. Whether it’s racism, misogyny, transphobia, homophobia, ageism or ableism (or any of the many others I didn’t list), the systemic entrenchment of them hides them from people of privilege in any particular area. This is why we must do better.

Privilege

Privilege isn’t an all or nothing thing either. While an indigenous man faces serious systemic discrimination because he is indigenous, he is a man, which provides him significant privilege in other ways. If he’s also heterosexual, able-bodied, gainfully employed, and in his late twenties, he may not find any discrimination in some areas of his life because of those areas of privilege; especially in comparison to an indigenous, disabled, lesbian, single mother on social assistance.

Only white, English-speaking, healthy, able-bodied, heterosexual, masculine, athletic, 25-39 year old men born in the first-world to upper middle class, Christian families who don’t have “foreign” accents live entirely in a world of privilege.

Reverse discrimination” is not really a thing. Being denied entry to a women only event, mosque, or Chinese celebration is not discrimination. It is a recognition that the rest of the space in almost the whole first-world belongs to you, and sometimes other people need some space.

The rest of us have a range of privileges and areas of discrimination. Some have many more areas of privilege, some many more of marginalization. We need to start accepting this rather than continually fighting for the bottom rung.

I would much rather have my places of privilege back. I’m sure everyone facing systemic discrimination would happily take the places of privilege of those refusing to accept they perpetuate bias with their words and actions.

Privilege is a difficult word for many people. It’s as if having privilege is a bad thing, or something to be ashamed of. It’s not. We must accept and recognize our privilege in order to recognize it is a place of marginalization for others. The sooner we accept our places of privilege, the sooner we can actively try to undo the foundations of systemic bias and reduce discrimination of all kinds.

“We’re all going to die. I could walk out the door and get hit by a bus.”

Yup, and if you keep talking I might push you under that bus!

Ahem, sorry, outside voice… ummm…

What I mean to say, is that when Bob says this he clearly doesn’t get it. This is a particularly hurtful thing people say because they’re uncomfortable. They don’t know how to deal with death so they make light of it.

While yes, anyone’s life could be cut short, when you have a fatal illness it will be. If you have a progressive disease that has progressed to its final stages you will die soon. Everyone else probably won’t (unless they’re over 80 at which point imminent death does include everyone so just get over it and stop being uncomfortable already Bob!).

Caretaking

Bob really needs to get over himself here because, frankly, IT’S NOT ABOUT HIM. This is really a selfish thing for Bob to say. It makes the person who is dying responsible for Bob’s discomfort.

If Bob and I are going to keep on talking, I will have to make Bob feel comfortable. Even though Bob is not the one dying, he has to be comforted by the one who is. Way to go Bob!

In this situation, we, the dying, must be the caretaker. We are the ones that really need support, but we have to be the strong ones providing support to others. It’s really tiring. It’s really irritating. It’s often more work than it’s worth. We start to move away.

Because Bob feels uncomfortable, embarrassed or ashamed, he moves away too. We end up alone. Isolated because we make people uncomfortable.

It is difficult to reach out to people who pull away, even if we want to, for a few reasons.

1. Rejection

First, it’s a hugely vulnerable position to be in. Reaching out to those who are uncomfortable seems obsurd. What if they say no, they don’t want to deal with it? Where does that leave us? Being rejected when you reach out to someone you care about when you are dying is devastating.

There is little time left to resolve differences, meaning they will remain unresolved. They may have remained unresolved had you both lived another 50 years, but time provides the hope it still might be. When only a few months remain, time is no longer on your side. This is unsettling and hard to accept, even though it must be accepted.

2. Continued Discomfort

Second, what if they say yes, but continue to be uncomfortable? This is even worse. If life is too short to care for those who are too much work, then it is definitely too short for someone dying to do it.

3. Hurry Up

Third, it’s as if they wish we would just hurry up and die already so they wouldn’t have to feel bad. I don’t think this is true, but I often feel like it is. It makes it that much harder to reach out. Anyone who feels they will be more comfortable when I’m dead is not someone I want to reach out to.

4. Letting Go

Finally, the process of dying requires me to start letting go of things, people and relationships. All of these material, worldly things can’t come with me, so I must let them go. This is part of my acceptance of my nearing death.

It’s why I must accept that some differences will never be reconciled and the love and hurt of them must be allowed to slip away. I don’t want to take these issues with me. If I don’t let go of them before I die, I’ll carry them with me as I cross over.

I don’t want to do them again. I don’t want to relive these hurts and feel this pain another time. I want to let go of them, the emotions, the pain and the attachments. I want to leave them in this world, in this life and move on clear of them.

Peace and much love my friends,

Lane ☮️💚🌀

The underlined words have links to definitions or articles that better explain the words underlined.

Followers watch for my next post in your inbox soon. Others, use the follow button so you don’t miss it.

The drawings in this post are my own. Please do not reproduce them or use them without my prior written permission.

Bob is a purely fictional character. Any resemblance to a person, living or dead, is purely coincidental.

On Speaking without Thinking: Part 1 Social Rituals

Meet Bob

Bob is just an average guy. He works hard everyday at his job so he can enjoy his evenings, weekends and holidays. This is Bob as he looked at the time I’m writing about:

He says the same thing to all of them without considering they are all very different. Instead, he spends most of his day thinking about what he’ll do after work, or on the weekend. He’s kind of on autopilot.

It was pre-Covid. I imagine today, Bob would look more like this:

Bob has a job where he deals with people all day. Let’s say he’s a clerk in a doctors’ office. It’s a neurologists’ office, where they specialize in treating MS-like diseases. He’s been there for ten years. He signs people in, asks them to wait in the waiting area and gets their charts ready. When they leave, he sets up their return appointments. 

He says the same thing to all of them without considering they are all very different. Instead, he spends most of his day thinking about what he’ll do after work, or on the weekend. He’s kind of on autopilot.

Bob: “Hello. What’s your name? Which doctor are you seeing today? Have you been here before? Photo ID and healthcare card.”

He says these things without even glancing up to see if he knows the person. It doesn’t matter if they were there two days ago, or if they’ve been seeing the same doctor for longer than he’s been working there, he still asks the same questions. 

Bob doesn’t really look at patients most of the workday. Even though Bob sees the same patients over and over again, he has stopped seeing who he’s talking to (he does this when he is not working too). They’ve all started to look like this:

When he has everything he needs he says:

Bob: “Please take a seat in the waiting room until your name is called. Thank you.”

Bob says this to everyone, even the ones using wheelchairs. I’ll discuss this in Part 2.

The meaningless rituals

Most of us are a lot like Bob. As we float through our day we interact with people without thinking about them or what we say to them. We ask questions we don’t actually want answered. Although this makes the questions insincere, we pretend they are not by calling them social rituals. We just say they don’t really mean what they mean, if you know what I mean … .

“How are you?”

We ask this without really meaning how are you. It is an extended greeting. This is especially true when we ask it of strangers. It’s meant as a beginning of a conversation. We usually have no actual interest in how the person feels, or whether they are sick. Even when we know the person is sick or grieving we don’t genuinely want to know anything about how they’re feeling. What we want is for them to say “Fine, thank you. And how are you?” Which we can then respond to with “Fine thanks.” This completes the ritual. We are then free to get on with the conversation, or to say something about how nice it was to see them so we can leave.

Why don’t we say something else? I learned at a young age never to ask a question you didn’t want to hear the answer to. In law school they took this even further, to never ask a question you don’t already know the answer to. So why do we ask this? Why don’t we ask something like:

“Hello. How’s the weather?”

We know the answer to this because we are standing right in front of the person. It’s not disingenuous because it’s vague enough we could be asking how the person feels about the weather and we wouldn’t be uncomfortable if the person answered it, just potentially bored.

When Bob enters into the ritual with someone who is chronically ill or dying, or is losing or has lost a loved one, this ritual can cause a lot of pain. Sometimes even though the person knows Bob doesn’t want to know, they can’t help it. They blurt out how they’re feeling. They tell Bob gory details he’s definitely not interested in. Bob responds by looking like this:

And quickly running away. We all would like to respond like Bob, but instead we hide that response, say something we think is sympathetic and slink away as quickly as possible. 

Bob reacts like this because we are not really supposed to tell him. Bob didn’t actually want to know, he was just beginning the ritual.

The problem is often nobody wants to know. That leaves us with very little or no outlet for our feelings. It also leaves us feeling unheard, uncared for and alone.

Most especially, for those who don’t feel fine, for any reason, the need to tell someone, anyone, what they really feel is a necessary human reaction. We are, after all, social creatures and the need to share our stress or pain is a means of reaching out and sometimes asking for help. 

We don’t necessarily want someone to fix it. 

We definitely don’t want someone to say “I completely understand”, because actually you don’t. You aren’t in that person’s body, feeling and thinking all the things they are. So no, you don’t “completely understand”. In fact you’re demonstrating you don’t understand at all.

We absolutely don’t want you to make it about you and tell us all about your experience of what you think is the same as ours, because it’s not about you. 

We also don’t want you to sympathize. We don’t need your pity or your idolization for being “so brave” or “such an inspiration.” We aren’t brave, we’re just living with what we were dealt.

What we need is your empathy. 

We want you to acknowledge our feelings, our pain, our fear.

Most of all we want you to hear us. 

We want to be seen under all of the crap we are going through as a person who needs love and caring, and most of all, respect. 

“Feel better soon.”

This is another social ritual. It’s something Bob says when he knows someone is sick and we are at the end of the conversation or visit. When this is said to someone with a chronic or fatal illness, it rings hollow because we are not going to get better soon or ever.

Bob may not have meant to be insincere but he has been. It’s frustrating. It’s infuriating. It’s saddening. Most of all, it hurts. It tells us Bob isn’t even thinking about us when he is talking to us. It turns the dying into the dead. We become ghosts, unseen even when being spoken to. Perhaps the worst part of this is that Bob is often unaware of what he just did.

It doesn’t matter if Bob said it because he wasn’t thinking, he’s in denial or he is uncomfortable and doesn’t know what else to say, the result is the same. It adds to the feeling of being alone. It reinforces the isolation.

People are social creatures. While dying is something we must do alone, because no one is coming with us on our journey through the veil, it’s something we want to be supported during by our social circle. Unlike many animals, such as dogs or cats that go away from their pack to die, people generally choose to stay with theirs. Maybe it’s just because we aren’t afraid our pack will eat us as we go, but I think it’s because of our need for love and our beliefs around death and what happens after we die. These things do separate us from animals, potentially more than eating each other.

Rather than further isolate people who are already feeling alone, why don’t we say something inclusive of all? Why not spread good feelings into the world? It just might make it a better place for everyone. Even if you don’t fully believe it when you start saying it, you will after a short time. If there is one thing I’ve learned from the journey I’m on, it’s that life is too short and fleeting to miss opportunities to tell people in your life they matter. 

It’s also too short to let little things eat at you, or to miss chances to receive love. That’s why it’s important to me to finish conversations with people I’ve cared about, because they are close to me, helped me in some way, cared for me, or cared about me with something a friend I still miss 10 years after his death always closed conversations with:

“Peace and much love my friend.”

To me this is a great way to close a conversation whether talking to someone sick or not. It’s an opportunity to spread two things the world, and each of us can always use more of: love and peace. Most people have too much chaos in their lives and could use more peace. I’ve never heard of anyone complaining about feeling loved too much or by too many people (except perhaps when someone complains about parents that are smothering them). There are certainly lots of people who complain about not having enough love in their lives, especially those with severe disabilities, chronic or deadly illnesses, or mental health problems.

Until next time: 

Peace and much love my friends, 

Lane ☮️💚🌀

Followers look forward to Part 2 of this post in your inbox soon. Others, use the follow button so you don’t miss it.

The drawings in this post are my own. Please do not reproduce them or use them without my prior written permission.

Bob is a purely fictional character. Any resemblance to any person living or dead is entirely accidental.

On Ghosts and Disability

This post is written about a time when I could wheel a manual chair. I was extremely fortunate to qualify for an ultralight chair through Alberta Aids to Daily Living. This allowed me to wheel a chair much longer than I otherwise would have been able to. While I no longer can go anywhere, the post is written in present tense because it is how I remember it.

I have walked in a number of worlds simultaneously, literally and metaphorically. What I find very interesting is who sees me in my wheelchair and how they treat me. When I was going to the University for Law School, I was treated really well in the Law School. I think this was because these people knew me. People would open doors for me, hold them for me, and get out of my way if they were taking up the pathway, especially ramps and elevators.

The rest of the University was dramatically different. People would rush in front of me and drop the door as they went through. If someone held a door for me, others would stream through preventing me from going. People would walk towards me taking up too much room for me to continue and glare at me, as if expecting me to go off the paved path so they could walk two or three or four across. They would block ramps and ignore my repeated requests to move until I threatened to wheel over them or their stuff, and then they would stare at me as if to say “How dare you”, “What gives you the right.” All the while they were completely ignoring the fact that they were blocking space actually designed for me, not them. They were the invaders, not me. Not once did they apologize to me.

In other public spaces, such as hospitals, office buildings, courthouses, shopping malls, etc., people just “do not see me”. If I am struggling with a door in a bank of doors, most people just walk through a different door. There are exceptions of course, but the majority of people simply ignore me. The exception, every time, are the other ghosts, the obviously homeless people. They always open doors for me, wishing me a good day as I go through, me thanking them for their kindness, for their help and for seeing me.

One time, I was stuck in snow on an unshovelled walk on a busy downtown sidewalk. It was snowing, and I was passing a building with for lease signs in the ground floor windows. People streamed past me: men in fancy business suits and heavy winter overcoats, women in business garb, also in heavy winter coats. A woman in filthy clothes, who smelled bad came up to me and said “you look like you need a push” and she gave me one, right up to the door of the building I was going to. She asked if I needed more help, and I said “no, thank you very much.” She walked away, wishing me a good day.

My primary care doctor, pharmacist, lab, and home all were in the inner city while I was getting around by walker and wheelchair (now I’m bed bound and live on the edge of it). In the inner city, people are friendly and helpful. I don’t struggle for any length of time. People open doors as I approach them and hold them for me. They tell anyone who tries to go through to wait until I’ve gone through. People further away from the door tell others close to the door to open it for me if they already haven’t. If someone is blocking a ramp or sidewalk they jump to get out of the way without making me slow my push. If they don’t, and I have to ask, they apologize, sincerely. If others are around, they give people blocking paths or ramps an earful if they don’t move quick enough.

These actions aren’t put on, or done in expectation of money. It’s a kind of solidarity. A recognition that the world is hard, and harder on those with disabilities, especially if they live in the inner city.

If I’m waiting for DATS, or another ride, they engage me in conversation. People with more wealth don’t do this with me. If I try talking to them, I often get sideways glances that seem to say what are you after, especially when I started using a power chair. Even others in chairs often respond the same way. In the inner city, others in chairs always speak to me and I to them. Wheeling down the sidewalk everyone says hello to me, acknowledging my existence. I may have spoken to a few of them before, but mostly we don’t know each other. We just have the common bond of being invisible everywhere else, ghosts.

It’s a welcome change to be seen as a person, worthy of a “hey” as someone walks by, or minimally a nod. There is always a brief meeting of the eyes at least. No matter who initiates it, there is a quick note of warmth in the other’s eyes, sometimes surprise. Not a challenge, just a connection, person to person. It’s a very welcome difference from being either a ghost or an intruder everywhere else.

Things Not to Say to a Disabled/High Risk Person During a Pandemic — Disability & Determination

Hi all, I came across this great blog and thought you all might find it interesting, educational, or something you’ve wanted to say to people yourselves. Please enjoy.

Over the last 7 months, I’ve heard a lot of things in relation to the pandemic. Some have been said directly to me and some not. Either way, I wanted to compile a handy list of things people really shouldn’t ever say to someone who has a disability or who is high risk for COVID […]

Things Not to Say to a Disabled/High Risk Person During a Pandemic — Disability & Determination