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Posts tagged ‘Disabled in an abled world’

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

The Burden (Revisit)

This post was originally published on November 7, 2022.

The disabled carry so much inside. On a daily basis we are challenged with what we let people know about our lives and our needs. Is it a good day or a bad day? Do we need to ask for help, and if so, how much of that help might be robbing us of our dignity? You may be thinking that we need to get over it. If you aren’t in our shoes, please think twice about that remark.

I like to think of myself as independent, though as I’ve lost more of my vision, I’ve had to ask for more assistance. I try to do as much as I can, and I’m noticing that the abled world is making it more difficult to do so. It adds to my daily burden. 

At first, I was going to write a regular post. Sitting here, I’m going to do this differently. Here it is: 

What I Do

As I 

wake, I notice

My legs

And

Scan the rest of my body.

I’m rested.

I move from the bed realizing that I can walk when others can’t do this.

I engage in morning listening to a book because

I can no longer read print easily. 

And,

I give thanks that I still can hear.

Today should be a good day. 

I think of those I know in wheelchairs 

or 

struggling to walk this day.

I hold them in my heart and hope that they will have the help they need to survive

Another day.

My mind travels to those who must have assistance in all things.

We don’t think about that much unless we’re directly affected by someone in that situation, and

I hope that caretakers will treat them with dignity on this day.

I leave the house to run errands

And

The sun shines in my eyes.

Even with sunglasses 

I strain to make sense of the path that

Is covered by foliage.

It is beautiful and crunchy and 

I love it.

But

I can’t make sense of the path with my cane.

How would I explain my reality? 

I try.

But

It is so different from yours.

You can’t really understand 

This life of mine.

Then I must explain to the abled that 

I can work, 

because they can’t imagine me doing what I do.

Should I do nothing all day

When I can do something I love? 

More of a burden

That I haven’t created.

I feel: 

Judged,

Enraged,

Worn out,

Like screaming!

I want to cry.

To protest.

To yell at people.

But

WHY? 

The disabled person’s greatest burden 

Is

That

We get lost in the shuffle 

And

Are not seen when we need to be seen.

Nov 26

Equal Opportunity Discriminator

This past week I honored those on the margins. I did a presentation on disability. It was nice to speak my truth, and to have others receive that truth from me.

There are realities that those of us with both vision and hearing loss face. When we step out our front doors, the world can be a hostile place.

My sister, who was more blind than I have been, expressed her issues with appearance this way: “If you cut your hair, I may not recognize you, so identify yourself.” As for me, I need several hours of “face time” with you so that your facial features get imprinted on my brain. Putting it all together for me is difficult because I spent the first year of my life blind.

The first year of development is when our brains learn to recognize and discriminate objects and people. As humans, we need to be able to identify people in all their detail, unlike how we would look at simple chimps or monkeys. We need a highly effective visual discrimination ability, and I have had to learn to do it because visual recognition skills develop during the first year of life. It’s been hard to do, and I’ve done much of it as an adult when I’ve been able to fully understand what I’ve needed to do to learn people’s faces. 

Stepping outside of my house also unleashes so much helpfulness in others. Then, suddenly, when I need a helpful soul, they are nowhere to be found. I think this sense of helpfulness is more about people being uncomfortable with the disabled, and needing to relieve their own discomfort. I’m fine with who I am and what I must do—even the difficult things.

Right now, the city I’m in is redoing the main street to create a better bus line. I’m cut off from my universe! The city didn’t ask me how I’d be affected, and once again I’m out in the nowhere, and they’re already two months behind.

“Where’s my village?” is something I ask more frequently now. I think those in the disabled community are asking this just as much as I am these days. With the fact that villages are disappearing, I shouldn’t be shocked that, once again, I’m posting on the cruel nature of what life can look like for those of us who must cope with a less-than-abled body.

I reflect back to being asked if I’d change it all for sight. My answer is still a resounding NO! It is all about who I am and what my disability represents. To be honest, I can’t imagine who I would have become without the disability. As much as I’d like to be able to see like you and hear like you, I wouldn’t be able to deal with it now. It would be as if my brain would struggle to make sense of it all. That really is a gift I would refuse.

Just as much as I love my petite body, I do love who I am in it. So, maybe living on the margins is also about accepting ourselves on the margins.

I have said that disability is an equal opportunity discriminator: it doesn’t discriminate at all. It doesn’t care about gender, race, age, intelligence, financial status, or anything else. If your number comes up, you’ll need to learn to cope with it. So, be kind to me, as someday it could be you needing the same help you want to give me when I may or may not need it.

I was saved the trauma of having to deal with disability later in life. In an odd sort of way, I’ve had it a little easier than my siblings, who had to greet their disabilities in their thirties and forties. I grew up this way. They each had to deal with another type of existence and coming to terms with the losses that disability brings, as well as the belief that they can still do it all.

I step out my front door, walk to the bus, and then a train, and am thankful that they are there for me. I still am dwelling on the margins of society. I’m self-sufficient in a world that prizes ability.

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.

Jan 4

The Tram

I’m standing on the inbound platform at the UMC station as the tram pulls in, and I board. The tram isn’t full, and I find a seat facing forward, not too far from the doors. I notice the quietness of the tram, and we pull away. The next stop changes everything.

I’m in what is the medical area, and the science park. The med students board, taking every vacant seat and filling the vacant standing areas. The next stop allows for more students to board, and the tram is filled with the chatter of the students.

I’ve taken this tram ride multiple times, and this time I stop to notice the voices, the animation with which the students are speaking. Then I look at the physical behavior of the passengers. They are alive with excitement, enthusiasm, and hope, and it is catching. For the first time I’m noticing the vibrant nature of the students.

Something tells me to stop my thinking, and to watch carefully. I listen to that suggestion and I quiet my mind to listen and observe what is happening around me. That 20-minute tram ride altered how I think about others in group settings.

Normally, I avoid groups because it is chaotic, and I can’t hear others well enough to converse with them. I wrote about this in “When Sanctuary Is Offered.” As I’ve sat with this experience the past few months, some things have changed.

Could it be that I opened up to some type of new understanding? Did I rethink the present hearing aids I have? Was it a combination of things? I realized that things needed to change and I took steps, and some risks, to change things. It pays to rethink things: it did!!!

With the new gadgets approved and all mine, I will venture into new situations. With an appointment at the UMC this month, it will be interesting to experience the ride on the tram in a new way.

I’m also having a new doorbell installed in my house. It will use light, and not sound, to let me know that someone is at my door. No more missed doorbells for me! Oh, and it’s covered by the insurance!!! As mentioned in a previous post, I went shopping for a better hearing situation!

I hear the noise of the organics being picked up and pause to think about the winter winds that blew all the leaves in the universe into my front yard space. I think about the storms that put it all there, and the storms that have blown unpleasantness into my life due to disability. I recall the time when I asked Jon to answer the question of the one gift he’d give me if he could. I still feel the same way about my body. Why would I want to change my core self? Yes, it would make some things easier. It would mean that I would not need to deal with people who show frustration at the way I do things: slower than they can do the same thing. I am happy with who I am. I’m proud to advocate for those with disabilities. I’m proud to be me. It isn’t my issue; it’s yours if you can’t deal with me as a disabled person.

Once we’ve taken an inner journey and done our soul work, things change. Going inside is liberating!

This time around, the work I had to do to get to new hearing aids wasn’t as intense as other things I’ve done.

How do you know when you’ve done enough work? My experience is that the things that were hard or difficult become easier to deal with. Doing the work wipes out a level of fear that can be present when confronting the nasty and the unknown. In this phase of things, and when dealing with our lives in new ways, it is important to tack a mental reminder up: one byte at a time. I think this isn’t something we all start out doing at first; it is something we learn our way into.

Taking it slowly and not being overwhelmed by things isn’t something that comes easily for some of us. We labor under the misguided notion that we can take it all on at once. Then getting overwhelmed by the task before us hits us with a grand force of wind. POW! Sometimes anxiety builds, and we stop it all, only to discover that we’re not where we want to be with any of what we’ve dealt with.

Going inside myself enabled me to flesh it all out. This time, I’m navigating a new stretch of the river that I’m surprised I’m on. I suspect it has some new places to tie my boat up to, to leave, and to explore the new interiors I’ll engage with. I suspect that this part of the soul journey will bring new things, people, and joy into my life.

I return to the tram, and as I watch and listen, I realize that I’m learning something about myself that I haven’t been able to admit as I’ve needed to: the isolation of my hearing situation must come to an end. I’m not the widow who is sitting alone on the tram. I am the widow who is claiming the life she knows is out there in new ways. I’ll risk large groups. I now have a tool that will enable me to do just that.

This all happened because I became quiet in what I once viewed as chaos. Had I not done that, I wonder what would have happened. Time to muse on this experience some more.