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Posts tagged ‘Disability awareness’

Mar 12

No, You Don’t Understand

An estimated 1.3 billion people, or approximately 16% of the global population (1 in 6), experience significant disability. This number is increasing due to population aging, the rise of chronic health conditions, and environmental factors. The vast majority (about 80%) of disabled persons live in developing countries. The result is what comes up when I did a search on Google. It is a WHO statistic. So, on behalf of over one billion people, most of whom are not in a developed nation, I’m going to gripe.

I’ve said it before: disability is non-discriminatory. Or, put another way, it just doesn’t care who you are. Disability gets you when you’re born, and it can be a part of what takes you out when you die. It is the big uncertainty in life. We can be any skin color, faith, gender, or age. Disability doesn’t care. It just plows through our lives. And most disability shows up in places where the developed world won’t ever visit.

We turn the disabled into some type of false hero. All a disabled person is doing is surviving the way they must. We are not heroes of any sort, and to put such a person on a pedestal may serve your ignorant needs: it isn’t helpful to the community. Rant over.

So, let me tell you about my day in the developed world.

I owe some things I can’t do to the fact that charitable souls have compassion and enable me to do them. This time it began on a Friday and escalated to this last Sunday while trying to pay bills. I was on the bank app, and all of a sudden, the thing went bonkers and told me I had to reactivate the app! It gets crazier, so, buckle up people, this is a wild ride.

Monday rolls around, and I try to do the thing that no almost blind person with only ten percent of her vision should try to do. I call the bank and wind up with a twit who keeps telling me she understands. NO, she doesn’t, and the fact that she keeps telling me the she does understand only proves that she doesn’t get my situation at all. Finally, she tells me that I need to go to a service point. The nearest service point is a good 20-minute drive, and more by bus. Now, I’m wanting to rip her ignorant thoughts to shreds. In frustration, I hang up. I finally go to my neighbour’s. He says he’ll help and asks me if I’m sure I want to allow him to have this data. OK, NO, I don’t want anyone in my data, BUT do I really have a choice? NO. I get things put right with the app. All is well. BUT NO, it isn’t. Now I need to get my business account back. This one is easier because there is no scanning involved. I can do this!

After I don’t know how many attempts to get it done, I call the bank, again, and get sent over to the business division of support. I wind up with someone who answers the phone happily. I explain my problem and my visual situation. She listens, and she gets it. OK, so we’ll do this slow. She can see from her end what is going on with things. After a couple of attempts we’re both puzzled by the lack of success. Then she asks if I’m on the business tab. WHAT? I didn’t see that. Am I the only person who doesn’t see that tab? No, I’m not. OK, so now I’m on the right tab, and it still doesn’t work. I’m not an idiot; I can do this. She’s stymied. I’m not knowing what to think, and then she says OK, this is a hail Mary pass, here it goes. What if, when you were on the app on Sunday, somehow the app went and updated itself, and you got told to reactivate? Go to the App store and see if you are told to upgrade the bank app.

So, off I go! Holy Moly, it is telling me to upgrade! So, I do the upgrade. I do the data again; I wait, and then, spontaneously, and without thought, I sing what I always sing when something like this happens: “HOLY MOLY, she threw the pass, Mary caught it, and it worked.”

Now, what I haven’t told you about this call is that the two of us are having a delightful conversation. We’re laughing, and trying to fix the crazy, and it took almost an hour. Now, she’s reporting this strange thing to the powers up the line. I.T. is gonna muse over this one.

She never said that she understood. She became a conduit for accessibility. We worked to get it fixed.

The sun is shining, and it is warming outside. The country is happy the sun has arrived. Spring is springing, and I can go out without a heavy jacket.

I pause, and once again, I give thanks: a thank you, because there are compassionate souls out there who will care enough to get that I’m not any type of a hero. I’m just trying to live my life, and to get things done. I just have extra hoops to jump through.

So, let’s talk about hoops. The hoops that could be made easier and that would give many of the disabled a fair shake at an easier existence.

Since I’ve lived here, I’ve heard countless references to the ADA, or Americans with Disability Act. Banks, public buildings, and all government sites must be accessible to everyone. So, ramps for wheelchairs and PIN machines, and web sites must be usable to everyone. Grocery stores and other commercial outlets do not have to comply. Somehow, the ADA is seen as the solution in countries that aren’t the US. I still had to deal with things that were not safely accessible to me if I wanted to go grocery shopping. Now, I do this online.

While the ADA allowed for equal Education for all through the IEP, or Individual Education Plan, for K–12 in the school system, it is not a guarantee that the plans will be put in place or meet all a child’s needs. The ADA is a great piece of legislation. The IEP, on the other hand, can’t guarantee that students, their parents, or education staff can create all resources needed. An example of this is that the IEP pigeonholes the person: for instance, a child that is both learning disabled and academically a high achiever. The school may not provide the proper resources for both situations. Where would the schools have put Einstein? During his living years Einstein spoke of having problems with reading and getting the right words out. It is thought that he may have been dyslexic. There are other processing disorders that could explain his spoken-of communication issues. I have friends who had to fight for children in this exact situation.

I’ve witnessed as clients with children in this category struggle to make it work for their kids. The truth is that income level can determine options. Parents who can afford private education where class sizes are smaller have children who can, in most situations, obtain the resources they need to thrive in an education setting. HOWEVER, having said that, even income may not enable children to have what they need. I’m saddened that this also happens.

The fact is that most public education is geared towards the traditional teaching process. I would have done better if I could have not only seen it and heard it: I wanted to touch it. What if the learner needs to include touch in their process? Chances are, that isn’t going to be a possibility.

As I write this, I struggle with the fact that, for some people, I’m writing about things that can’t be, and I’m writing about things that are so far beyond the developing world. Then, as I pause, I remember a TED talk about a wise educator who modelled the world for his class, and the kids had to come up with solutions to the world’s problems. As the school year came to an end, there were still unresolved issues. He though the kids would fail at it—just like adults are failing to do the right things. Then, as the clock wound down, the children came together, and through compromise and imagination, the world in that classroom resolved it all. They wiped out poverty. Maybe we should be asking our children! I think they may understand.

Jun 3

1 Comment

Snark

Learning to not walk funny is a process, and it is taking hours of focused training time. All of this is done in the home. I exercise on the treadmill, and I stand by a chair to do some of the work. I’m up to eight minutes on the treadmill, and it is still taking ten minutes per session for the rest of it. The goal is to get up to thirty minutes of walking time per day. At the ten-minute point I’ll try to leap to fifteen minutes twice per day, and then up to thirty minutes in one session per day.  

The truth is that this is eating my day.

Ticktock, the clock goes round, and as it does, I still walk funny. I’ve asked the physical therapist if she sees it, and she says no. I know that when I get up from a chair, I walk goofy. So, I don’t want to sit that long. I think I’m becoming impatient with this process. When I think about it, I have to admit that it is better to be here at home than stuck in a rehab center. I can do this at home.

I’m caught up with some things, still catching up on taxes, and now I find myself attempting to figure out how to get my hair cut and my hearing aids checked. When I stop to think about things, sending me home was needed, and I need to have a driver on call until I can really walk again. Being mostly blind and not walking in a steady manner is not a good combination. Not walking well shows me how bad my vision is. It is scary to see it.

When I take notice of what it is I’m not able to see, and I allow myself to think about what fully sighted people see, I cringe. What I see when I look is the places I can’t walk safely. This last week, while heading home from the UMC in Utrecht, I was confronted with a construction mess. For sighted people who could see, the process was easy. I had to figure out that I couldn’t get to the tram and would have to take the bus down one stop, get off, and then walk to where the trams pulled in. I got lucky, and people were helpful. The shock of it all is never a good thing. Someone with Usher syndrome told me that for her, every time there was more vision loss, there was more trauma.

While I’m not affected by Usher, I do understand the risks involved in going out when you can’t see or hear as others do. It is important for me to be steady on my feet, and to get back into a safe walking mode.

As much as I post on this—and I may sound like a recording or a broken record—I have to say it again: being disabled is traumatizing.

Last week I had to call for help with something. The woman at the other end said, “Perhaps you can ask your neighbor for help.” I replied that I’d done that earlier in the week, and that while my neighbors are kind to me, I am asking you for help.

G: How would you feel if this was said to you constantly?

Rep: Oh, I understand.

G: No, you don’t.

She had nothing to say in response. She had not a clue about what I deal with daily in an abled world as a disabled woman. She never will, unless it happens to her or to someone she cares about. I hope that someday, when she’s still got all her marbles, she’s bugged by her neighbor.

Sep 6

When No One Speaks

In July I attended a webinar on diversity. The presenter knew two things: people of color and compassion for the LGBTQIA2S community. And the presentation, or lack thereof, bombed. Just my opinion, but I know something about the subject.

What really bugged me is that he really didn’t have any presentation; he wanted people to ask him questions, and the hour was Americentric. It was an hour I’ll never get back.

Many people, when they attempt to speak about diversity, completely ignore the community that intersects all communities: the disabled. It is as if they have blinders to the reality that someday, they could become a card-carrying member of the disabled population.

When these conversations occur, if we’re mentioned at all, it is as an afterthought. This really bugs me! We have conversations about everything else that is diversity, and we even talk about use of white privilege and economic privilege, and the disabled are left blowing in the wind.

The voices that should stand for us don’t really show. Parents show for their children. Who stands for the vulnerable adults? Special interest groups? Many of those groups focus on children.

I’ve stood for myself, and I sure wish someone would use their privilege to stand for me. I’m worn out from being the justice warrior in this area. I may be an enneagram type eight, but who will speak for me when I need assistance? For the most part, I’m left to find it on my own.

Finding it on your own can be messy. And the mess in my life came to a crashing halt days after that webinar.

Lessons From Room A341

It began on July 20th, after a day in Utrecht. I woke up tired and attributed it to the running around I’d done the previous day. By Saturday morning, I had to fight to get out of bed, and Sunday I felt awful. Monday, I let the sick state of being take over, thinking that resting, plenty of fluids, and eating would fix the situation. It got worse. The next Sunday, I knew I’d better call the doctor’s office. I was sicker than I’d ever been in my life, and my gut was telling me that I needed to get to the hospital. I also needed the doctor to make a house call. My head was working well enough to know that I couldn’t care for myself. In the past week, I’d become disoriented during the night and couldn’t find my way out of my bed or my room. I couldn’t even think straight enough to turn my lamp on. This was bad. I also knew I was a physical mess. So, Monday morning I rang up the doctor’s office, and around 5:00 PM the doctor came. She called the ambulance, and I settled into more of the disorientation that was present. I was finally able to just lay in a bed.

After eight hours in an ER, and the staff finally able to get the proper IV and other things inserted into my body, I was moved to a room on the same floor for observation. That Tuesday, they finally sent me upstairs to a room. I think it was evening by then. Wednesday, after cultures were grown, I found out my diagnosis. I’ll say that it wasn’t the E. coli that was doing bad things to me—they could cure that with antibiotics—it was the kidneys and my diabetes that went completely out of control. My personal education was about to expand, and I was also about to expand other people’s education as I lay in a bed in room A341.

If there is one thing I don’t like, it is having to explain the why of, after over twenty years of living in this wonderful country, my Dutch is so bad, and why I can’t speak more of it. Being hearing impaired and learning Dutch do not pair well. As languages go, this one is like a spoiled child who keeps wanting to change the rules because no one has told them NO. I lay in the bed, minus my hearing aids, having to tell people to speak only English. The fact that my vision was bugging out on me was less of a worry. I also had to deal with that.

I’m having to explain this to people when I’m really sick, not fully understanding what is going on, and my head is being hit with not knowing what I need to do to process it all. And, to top it off, I’m weak.

I’ve come to the conclusion that teaching hospitals at universities work better for me. I don’t have to explain things.

I’m angry, and all I want is to be shown some consideration, because nothing is working correctly. Why do I need to explain this to everyone? I fantasized about what I’d say when I could write. I don’t remember what I thought. I do remember that it hurt to think about it. I was really too sick to think straight.

The Upside and the Downside

Having my meals brought to me, and discovering that someone in the kitchen was able to do fish that tasted amazing, was wonderful. I had to admit that if one is sick, this is the way to do it. Yet, not having physical visitors took its toll. Messenger and Zoom phone helped with that.

Most of what I’ve learned I’ve discovered since discharge. It’s been eye opening.

When I use the word “sick” in the bullet points below, I am speaking of the “sick” that puts one in the hospital, and that requires longer recovery periods:

  • Being sick can cause trauma to build.
  • Being sick can cause someone to become self-centered.
  • Being sick can close our eyes to the lessons we need to learn around our own situations, and how we treat others.
  • Being sick means we need to listen to others when they tell us to slow down and nap during the day.

I feel awful about the self-centeredness and realize now that it stemmed from trying to recover too fast.

I’m convinced that there are times when nursing staff don’t understand the behavior they are seeing. Trauma can build due to uncertainty, and in the early days of my hospitalization, I didn’t understand that what was going on could have killed me. I was in a daze, and nobody picked up on it. I had told a friend during my time at home that “I don’t have good sick skills.” This is because as a child, what I learned post all of the normal stuff children get was not much. I was a healthy person. It has caught up with me. It is also my personality. I don’t like to stay in bed. I share this because of the fourth bullet point listed above. My doctor told me to take the time to nap if I felt I was tired. She also told me to begin to build up walking strength slowly using my treadmill. I tried to ignore self-care the first few days I was home. Then I made an effort to follow her suggestions, and I found that my strength was returning! 

If we listen to our bodies, we can learn wonderful things! It’s been over a month since this began, and today I’m enjoying a pleasant afternoon at my computer. I’m gaining strength, enjoying insights, learning about myself and others, and understanding that my challenge is to keep healthy in new ways. I’ll keep this short so that I can exercise a wee bit of self-care. I’m doing well with this new routine of mine. I just wish I wouldn’t need to do so much explaining… and yet that is what we in the disabled community must do.