Posts from the ‘Living With Disability’ Category

Gratitude for Tech

In early November, on a lazy Friday afternoon at around 3:00 PM, my tech world blew up. The power went out in our neighborhood, and with it, my computer died. While I knew it might be repairable, I also knew this was not the first round with this issue. Getting it to the repair place would be one thing; the other thing was whether I wanted to spend the dough to have it blow up yet a third time. The next day I ordered a new machine. That machine arrived three weeks later. In the meantime, I was on my iPad, and had to deal with eye strain. 

This time I began to notice that I depend on my tech, and I need to use my Mac for work, and to do some basic tasks. I was in panic and upset mode. I think I drove a few people to collectively shaking their heads.

Technology is a gift, and a curse. As a society we’ve surrendered ourselves to machines with screens, social media, and a connected lifestyle. I didn’t grow up this way. As a kid I had to ride the bus to the library, have the librarian locate the proper microfiche, and then copy information. Copy, paste, and cut weren’t options. Research, advertising, and social connection were so different! Google makes our lives simpler. Yet, here I am typing this tech lament. Why? 

Over the past few months, I’ve ranted about issues surrounding disability, and how many don’t really get how we roll. What works for you may be a far cry from what will work for us. What works for one disabled soul will not work for another. This time it isn’t about cutting us slack: it’s about understanding our panic and why the loss of tech is different for us. For us, it can become a crisis.  

I’ve been thinking about this for some time now, and it stems back to childhood for some of us. It’s about parenting and beyond. 

There was a time in our history when a child was born, and the doctor sent the baby home with the parents to let them discover that “something isn’t quite right with our newborn child.” I was lucky because my parents understood what they were and weren’t seeing at six weeks old. In 2022 we understand what disability looks like at birth, and we’re aware of what it might look like in early childhood. This translates to being able to provide resources that will enable a child to succeed in school and in life at an early age. It also means that if tech is to be part of that process it can be delivered to them. Individual Education Plans (IEPs) can be structured for the the child to include needed assistance. (OK, if and when the system works well.) Providing reliable, accurate information to both children and parents is a huge portion of the process.

There is another part of the issue that isn’t tech, and it affects us deeply. It is about having accurate information for lifelong interaction. That information comes from two sources: professionals and parents.  

If someone is born with the disability, they are dependent on parents to lay groundwork so that as adults they understand their situation. If they become disabled later in life, doctors and other professionals need to companion with them to enable the disabled person to gain a complete understanding of what is going on in their mind and body.

The knowledge we have now, versus what the medical profession could have told me in 1970 when I was transiting the education system, has changed.  

I’m not here to talk about teachers. They are the frontline. I will say that teachers are there to teach. A checked-in parent can assist the teacher to ensure that their child is given the best possible shot at succeeding in life beyond the classroom walls. 

How do we help? I will spend the time here talking about skills. 

Do children have the study skills they need to compete in the real world? Are they given the chance to work to their full potential? For instance: a child with a learning disability may need to learn in a different manner than a child that doesn’t have that disability. The learning-disabled child may be very gifted, and need the stimulation of an Advanced Placement (AP) class in high school. Are they given that chance? Learning disability means that a person needs to get information into their head in a different manner than how they may be taught. Tech comes into its own here. The ability to hear the text read, to talk it out, and to even feel something might be options here. 

Processing disorders are common, and once it is understood that a student needs to think things through differently, it changes the game. 

Tech can be a gift. We can level the playing field with accessibility features that count. Audible, Kindle, Book Share, and other options open up the world to the visually impaired and people who deal with a variety of processing and learning issues. Now children who might have been told that obtaining an education beyond the basics of K-12 find themselves applying to graduate programs!  

What is understood now wasn’t understood when I was born. Back then my options were: learn to type and/or learn to read braille. Typing was the logical choice. Was I viewed as a higher education candidate? No, not as a child. As an adult that became possible. As an undergrad the Americans with Disabilities Act (ADA) paved the way. I had readers that enabled me to consume volumes of information. They had eyes and could point out things I couldn’t see. It was the tech that put me on the same level as everyone else. The tech didn’t come about until my grad school days. Now, I can’t function without it. I am back at the crisis situation, and what it did to me.  

I think that this piece is more of a post about being thankful for what I have as someone with very low vision. While I can see a face on Zoom, hear the distress in a person’s voice, and understand that tears are coming, I couldn’t do it without all this tech. 

I did have a tech crisis, but today I’m thankful that I have tech at the ready, and that I can move forward with a more appreciative heart.

The Burden

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.

Dear Helpful Soul

Dear helpful soul,

I realize that when you see me at a street crossing, you want to take my arm, tell me it is clear to cross, or even help me to cross the street. Your kindness, while well meaning, is not appreciated. I’ll explain why this isn’t helpful, or needed.

I’ve been living with disability my entire life. For many within the disabled community, this has been our situation. For some who are disabled because of illness or injury, this is not the situation. Their journey into disability might be more traumatic. They may slowly lose function in an area of their body, wake up one morning to the horror of lost capacity, or find themselves in a hospital bed with a missing limb. Many of us, if not all of us, within the disabled community deal with trauma surrounding the disability, and some must cope with ongoing trauma due to a gradual loss of even more function. Imagine someone with Usher Syndrome, who faces this on a daily basis. When sight or hearing can disappear, or you watch as you see less each day, or can’t tell what is gone until there is a radical difference, it is traumatizing.

Trauma may look different for the disabled. Please, ask and listen to understand. Someone may seem to be reacting abnormally when it is normal for their circumstances. When someone lives with ongoing events that are traumatic, and treatment for the trauma doesn’t completely solve the problem, cut them some slack. They may need it.

In most of the above situations, the journey of learning to live again may take a person to a rehab center. My journey into a rehab center began with the realization that I’d lost more vision and couldn’t see as I once had been able to see. I was down to twelve percent of my vision. For me, rehab was about learning better ways of doing things, using less of my vision, and confronting myself in a new way. I’d spent most of my life trying to fit into mainstream when I didn’t fit into a mainstreamed situation. I had to come to an understanding that now, more than ever, I had to embrace new ways of doing most things. When I think of leaving my home without my cane, I cringe and know I’m not safe without it.

Why do I need a cane? At first, I thought the need for the white cane was to enable me to navigate tricky spaces. I understood that I needed the help at night, but why did I need it in daylight? The longer I used the cane, the more I became aware of a few things. The cane let me sense areas to stay away from, such as sand or gravel. Both sand and gravel do not allow me to feel what I need to feel underfoot. I need to avoid both sand and gravel because I could slip and fall. The same scenario goes for ice and snow.

The cane also serves as a warning to others that I’m not going to see you clearly. I may not see you at all because you are out of my field of vision. People need to be prepared to take evasive action to get out of my way! This brings me to my first gripe: anyone on their phone and not tuned into their environment. Do you want me to collide with you? No, you don’t. Prevent this by walking with 100 percent of your attention on the task of navigating the space you are presently in. Having had several close calls with people who have been inattentive to their environments, I know it would be appreciated by so many. We don’t want to injure you or become injured by you. While you may not be driving, you are navigating spaces, some of which are very crowded. Please look out for oncoming people because if you don’t, someone might say something like “Watch where you’re going!” to you. They’re correct in saying this to you! Your phone can wait, and if it can’t, then move to a safe space to focus on what you need to do.

If you feel I’m being harsh, I’m attempting to protect myself in an environment that isn’t always friendly to me because I can’t see everything.   

Offering Assistance

Here’s some handy advice on assisting those with visual disabilities. You’re at a street crossing where there is no signal. You can see that the traffic is nonstop (the visually impaired person may be using their hearing to know when to cross). You also see that there are gaps that would be difficult for the disabled person, even though you could make it to the other side rapidly. You could make the offer of assistance in this way: “Wow, this traffic isn’t going to slow to let you cross easily. Would it be helpful to you if I assisted you to make a faster crossing to where we need to get?” If they say yes to this question, ask them how they want you to walk with them. This approach places the disabled person in the position of accepting or declining, and it comes with a reason for the offer. It is good help that may be very much accepted and causes us to accept the offer because it isn’t a rescue, allowing us to remain dignified—and that is a win for everyone! If we’re at a signal with a walk feature, we don’t need your help.

Speech and Hearing

Imagine not being able to hear clearly. When you can’t hear clearly enough to distinguish a D from a T or and S from an F, or other consonants and vowels, the life of a hearing-impaired person becomes stressful. 

Imagine trying to spell words that you can’t hear properly. Imagine not being able to pronounce those words properly. Add the challenge of uncertainty when you’re not sure if the word you heard spoken was “who” or “shoe.” The conversation becomes draining, confusing, and if you’re in a crowded room, it can become difficult. Social situations can become a challenge. For those with a hearing loss, the issue may be about isolating as best one can. 

While at the rehab center, those who dealt with the added hearing loss gave voice to the difficulty of hearing in the crowded dining area. I spoke with staff about not being able to enjoy the mealtime, and the need to engage in conversation at the table. No one had spoken up about this issue before. I was asked for solutions. First, I was isolated. That didn’t work. I didn’t want to eat alone. The next step was to ask others in this situation if they were experiencing this. “Yes, I am!” This was the common response. The next step was to reserve a table for us. This table was on the edge of the dining area. Nope, that didn’t work. Then they put us on the other side of the space. They were hoping the distance would solve the problem. Distance didn’t work as the noise trickled into our space, and it was difficult to filter it out. When I left, they were still working on the situation.

I’m faced with the fact that I need to semi-isolate in social situations or avoid them altogether. I’ve tried it both ways, and enclosed social situations with heavy noise levels are a pass for me.

I’ve been in The Netherlands for over twenty years now. I’ve tried to learn to speak and hear Dutch. It has been a challenge to learn a second language with a hearing loss. For the most part I try my best to converse in Dutch, and for the most part people are polite. Then there are the ones that judge and condemn. I’m told it is my fault that I can’t speak this language fluently at this point in my residency. The people who respond to me negatively are few in number, and to them all I can say is that given my situation, I do my best. Don’t judge until you understand that hearing is my challenge.

So, helpful soul, please listen for understanding. Understand that I know what I need, and above all treat me, and my disabled brothers and sisters, with respect. We’re having to face this every time we step out of our front doors. Cut us some slack, please.

Leaving the Safe Space: Part 1 of the Holiday Journey

On August 31^st I boarded a flight that took me to Wales. I’d be there for three weeks. What I didn’t expect was that I’d get an education on my disability. I observed myself in ways that I hadn’t done in years, and I discovered that environments can be illusions. It was a great holiday and learning experience. 

Before Jon’s death, I had created a safe environment for myself in this home. I’d forgotten how hard I worked to accomplish the deed. Jon had his space, and all other spaces were “Gail friendly.” After his death, I put the final touch on this place. The final touch was doing the front yard, to make it safe for me to be in. It took years, and careful thinking, to do it right. I needed to look inside of myself and ask, “What is and isn’t safe about this? What do I need to work in my home?” I realized that I needed to order new office and bedroom blinds, lay better flooring, and move things around in the kitchen. I reworked where furniture was placed in the living room. This home has become so safe that I haven’t wanted to notice its safety, and I became oblivious to what I had created. I realize now that I didn’t want to leave my safe haven. Now, I will leave more often because of what I learned. I need to get out, get away, and return refreshed. Yes, I needed this holiday, and I needed to learn some things about myself.

There is a process of becoming reconciled with one’s own disability. When we’re born with it, we adjust slowly. It feels normal to us. As children we naturally think that the world may be the same for others. I thought, at first, that how I saw was normal. Then I matured and found out that while I saw less than others, my vision didn’t work the same way. My seeing was radically different. Talk about a shocker! An example of normal versus abnormal would be like going into a functional home and finding out that not all families fight all the time. For a kid who comes from an abusive situation, this is a great deal to process, and then to attempt to unscramble on their own. My vision issues were present from the beginning; as such, my parents normalized things. From a young age I had to deal with what might be considered an adult issue—I had to figure it out. No one thought to help me make sense of it because I didn’t know, at first, what I should be asking.

I’ve been sighted since I was a one-year-old. My vision, what I have of it, is what I have. It’s my normal. Lack of vision didn’t slow me down: I found constructive ways to make things happen.

That was the way it was—until it changed. It changed for me one cold November evening when I engaged in some Night Walking. That night the world became unsafe for me, and I discovered I’d lost vision. That night led me to the ophthalmologist, realizing I might need a guide dog named Maira. It would also lead me to a place called Loo Erf, and fifteen months of rehab with the help of Koninklijk Visio. While the Loo Erf was a lesson in adjusting and confronting my vision once again, it forced me into the realization that I had lost more vision due to the PXE I lived with (Thanks, but Not This Gift). Looking back, I thought I’d done all the work. I was wrong. There is always more to discover!

One of the issues that I’ve had to deal with, and I’m not alone in this, is that I need to control the environment. I need good lighting, the best seating I can get in any room, a good hearing situation, and spaces that allow me to function as normally as possible. I’m not a control freak, but I need to see and hear it all. This also came up at the Loo Erf with my mentor, who thought I was being controlling. He consulted with another mentor who worked with visual and hearing issues, who informed him that I wasn’t controlling, but rather I was doing what I needed to do to gain environmental control in order to maximize the best situation for myself.  The holiday was a lesson in gratitude for my environment, and also a lesson in what I can’t do by myself. YIKES!!! I discovered a list of “can’t-do-it-alone items.”

I can’t eat in poorly lit places anymore; I can’t walk and explore new places without assistance; it is harder to adapt to new places rapidly. While I can navigate a new location by creating a map in my head, I may not see all of the dangers without a sighted person to alert me to them and prepare for them. And so it was that “Myrtle Mae” (my cane) and I had a grand time in Wales, and I had sighted people with me the entire holiday. And yet, I still silently freaked out when the new space came up. It was a cross between wanting the adventure of it all and freaking out that in order to have the adventure of it all, I had to do new places that were not safe or familiar. It could have, but didn’t, traumatize me. I know how to deal with such things now.

My cottage mate, Sara, was a gem. She sacrificed exploration to allow me my limited abilities. On Saturday, while I crashed, she went out exploring. I’m glad she did. Grace and Ken were loving, kind and gracious, and they took me to Joe’s Ice Cream Parlour. Claire was her wonderful self; we talked and giggled and learned from each other. (Thanks for the taco run.) Sue and Paul were delightful. None of them made me feel ashamed, awkward, or incapable. If I needed “eyes,” they became “eyes.” Unpacking and repacking is never easy for me. Taking the suitcase down and setting it up again was not fun. Everyone was stellar during the time I was slowly coming to terms with a reality I wouldn’t connect with until I walked through my front door. The reality: my home is what I need to have in order to make things work for me visually. I’ll leave because returning will reinforce some good things. I’ll leave home because I need the time away from my home with a holiday.

Looking back, I realize that, along with the cough from hell, I was dealing with a vague uncertainty that hit me each time I walked outside, had to learn a new place, or navigate something else that was new. Myrtle Mae and I walked, but I was never alone. The fact is that I only have 12% of my vision left, and that isn’t a great deal of vision. It’s enough to consume tacos and to do the things I did. I’ve returned home to a Gail-friendly home. It is good. 

I’m still in shock over what I learned, and know that my reality is far different from the safety of this home. It is unsettling. It is real and what I and so many other disabled people face when we leave safe environments.

The Hitch: Part 2

Is preparing to go on holiday always a hassle? I got all the crazy put into place and found another crazy but not-so-crazy something waiting to greet me: my calendar! I think I need to travel more often. It could serve to keep me on my toes.

The above sentiment is healthy, and yet, I don’t like to travel due to what I wrote about in the first post; here I am poised to do this again. I know I’ll love it once I’m there; it’s the getting-there part that is annoying me. It’s also the fact that I’m self-employed, and the secretary/boss has to make sure all things are buttoned up before going. The hitch? People with low vision don’t do things fast; we do them slowly.

I can listen to stuff on audio that is at a faster speed than you might think possible. It takes time to learn to do it. When it comes to seeing, I look slowly to make sure I don’t see it wrong. So, clearing my schedule takes more time. Everything does. I wish it were not so.

The most frustrating thing I deal with is the “abled” who get bugged because I’m not doing it fast enough. Do your work, people! I am not your problem. Your inability to exercise patience with me is your issue, not mine. My independence is not up for grabs. Is yours?

Maybe the biggest hitch in our lives is people who aren’t willing to allow those of us with lesser physical abilities the opportunity to create our own ways of independent functioning. Those of us who have done our work know our limits. We ask for help when needed. The chances are high that in therapy, a rehab center, or somewhere else, we’ve had to come to terms with hard realities that haven’t broken us. If they did break us, it was only until we scraped ourselves off the emotional floor and got up again, knowing we could rebuild ourselves. We’re secure in what we need and don’t need. We don’t need others trying to feel comfortable for their own sake.

I spent fifteen months in a vision rehab center, learning how to do new things independently, without the use of my eyes. The two most essential skills I learned were how to talk to others about what I see and don’t see, and the ability to face the ugly truth about what my life really is. Simply stated, I learned to deal with messiness in constructive ways.

I spent one hour every week being confronted by the sweetest woman. She could match her clothes to a coffee cup and dish out confrontation of the highest caliber. She made me think, reframe, and understand myself as a person with disability. Most of the residents didn’t like the process; I inhaled it!

Our independence comes at deep personal growth, and often we pay a price for that growth. We lose friends who can’t deal with the fact that life is messy. We gain new friends who get that the messes of our lives encourage the roots we’ve planted to go deeper, to reach the water that is buried deep within the earth of our souls.

We’re strong; we can stand for ourselves. So, cut the worship narrative—we don’t need it!  We’ve dug down in places you may have not gone yet. You may have dug in soil we’ve not been in. Let’s learn from one another by offering up the needed insights we can give to each other.

I’ll settle into a slow, methodical clearing of my calendar this week. The days of fun, laughter with friends, eating, and discovery are near at hand! Time to move towards it. Hopefully there won’t be any holiday hitch.

The Hitch

I’m planning my holiday, and over the next two weeks I need to firm things up. During the past few weeks, I’ve come to understand that Covid-19 set me back in the travel department. I had not realized this until I started this process of booking flights, making sure I could get to where I was going, getting the proper testing done, and making sure that I can get to the airport. When you’re disabled, can’t drive, and depend on third parties to make things happen, it puts a kink in things.

There is a part of me that doesn’t want to deal with any of this; I just want to stay home and not deal with the hassle of it all. I know I can’t do that. So, I better face up to the hassle and get it all done.

Meanwhile, I’ll tell you about why being disabled and traveling when you’re single is such a major pain-in-the-everywhere.

When the average person plans a trip, they plan the trip, get themselves to the airport easily, check in, find the gate, and get on the plane. When the average disabled person plans a trip, there are added complications: HOW am I going to get to the airport? Is my needed assistance set up and confirmed? Is the airline I’m flying on friendly to people with my particular disability? Are the airports friendly to people with disabilities? If I’m on public transit, is it reliable? If I’m in a taxi, is it reliable? If friends are helping, are they dependable?

Now, add to all the above that I’ve got to meet travel requirements for airlines and countries before I board a flight! Can I get to a testing center? Do I need to ask someone to take me to the center? When do I need to make the appointment? Are the sites for the information accessible?

By this time, I want to curl up, call it off, and stay home. That won’t do.

This leads me to people I know who use travel services that support the disabled, at a slightly higher rate. They pair people with companions. For some people, this works well. For me, I’m not really interested in this type of thing. So, I have to deal with the annoyance of creating and doing it myself. Visiting friends for this holiday is the best option.

Don’t take this the wrong way: travel is skewed to favor those who can easily do it. It brings back memories of family activities where my siblings would be able to get to the accessible places; my mother felt like she needed to stay with me, and I felt guilty over depriving her of being with the rest of the family. “Mom, I can watch,” were words often spoken. The memory hurts. Now, I don’t just watch—I join in on my own terms as best I can.

I use the “wheelchair” service, I get assistance, I have cards in large type for safety instructions, and I meet some very nice people who are there to help me get to where I need to go.

This time around I’ll connect with friends that I love. I’ll explore beaches and other places, knowing that those I’m with will understand that I don’t see the world as they do. This time I’m staying in a cute but quirky cottage by the sea—some wonderful locations that will afford me more beach time than I’ve had in almost a decade—and I’m going to eat my way through all destinations. Eating is one thing that I can do without issues! So, let the feasting begin the moment the wheels are down and I’m on terra firma!

This week I prep so that next week I can relax about it. This week, I’ll embrace the insanity and make sure it is all ready for the safe, fun, event-filled days I’m hoping for. Next week I’ll reward myself for a planning job well done. Well, that’s the plan right now.