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Posts tagged ‘Disability struggles’

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.

Feb 12

Two Dots and a Bouncy Ball

My world has been challenged by panic-out-of-control crazy. What do I do about this? It has to do with my ability to read. The state of overwhelm is handled by slowing it all down and being able to rationally think it out. When the thinking is done, the solution is clear, and then you just work the solution.

A friend with Ushers told me that the hardest part of her process is the daily trauma of waking up with just a little less sight, slowly saying goodbye to all of her sight, but not knowing when it would all go.

Last night I listened to a woman talk about the things she could no longer do. No longer doing what we could once do is the focus of the beginning stages of the process of loss, grief, and, finally, acceptance of a new life.

While the words are easy to type out, doing them is not so simple. The anger, rage, depression, denial—and the ultimate loss of what was, for me, easy—now turns out to be a long journey. This journey results in each of us finding out what we’re really made of. It is ugly, and in the end, it can be beautiful.

And so, my own journey was re-established as Kindle took out the text-to-speech feature. I don’t like voice-over for books. What other options did I have? After researching it, asking questions, and finding out that what I’d need to do was reasonably priced, I ordered my two little dots (Amazon Echo dots). Yes, Alexa has arrived at my doorstep! The blue one will be upstairs in my bedroom, and the white grapefruit-sized dot will reside in my living room. I can program the dots to serve me in all my listening needs. I’ll be free to read where I want to read! Now to see what I can read! My Audible, Kindle, and music will be at my voice command. Thank-you, adorable dots.

Or maybe not so fast. I have to set them up with the phone app, and the phone app is in that faint, small font that some kid with x-ray vision designed. Good luck, kid, when your parent or grandparent comes at you yelling that they can’t read it. NO, you’ve robbed me of my dignity—I’m disinheriting you for this savage act. Good luck, kid—you’re gonna need it. Wait until it happens to you. Ah, but I digress.

My bouncy, happy self is not bouncing right now because the world doesn’t yet fully understand that by not making things accessible, they leave me out of activities I need to be able to do. My joy over my dots has faded to frustration and sadness. Once again, I mourn the loss of pleasure.

Once again, I have to struggle to do what sighted people do so easily. I have to ask for help to do something I could do it if I could see the screen. The joy of the new dots has passed; the bouncy ball is deflated, and once again I must seek help for the simple things that low vision blocks me from doing. I listen, and I feel it all: the deflated ball and two dots waiting to be useful to me. There are no other words for my sadness.