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Posts tagged ‘Disability’

Mar 7

Where’s the Village?

Anger, rage, and the ongoing process of being shoved to the margins as a disabled person: it places the disabled in a position of being labeled as angry, and while some of the label might be justified, not all of our anger as a community is justified.

This past week I was given feedback (privately) that I have anger issues around disability. It has caused me to experience some sleepless nights, and to question how much of my own stuff I’ve worked through.

After sitting with the feedback, crying, and realizing that I don’t want to offend or put people off in such a manner that I would not gain support of the issues I’m passionate about, I decided that I do have some unresolved issues.

The issue around the anger is twofold. The first part of the anger stems from how society has misunderstood the disabled, underestimated us, and passed judgement on what we as individuals can and can’t do and what we need to make our lives work. This in itself is enough to cause riots, and the riots don’t happen. Why? Because we don’t have the energy to riot: we’re burned out. 

We’re burned out because we’ve reached out to different communities and we get put to the marginal space once again. It sounds like this: “Sure, we care about you as a disabled person, but ____ takes precedence. We’ll get back to you and address it.”  When someone uses “but” in this way, it feels like a negative. It feels like everything before the “but” just got washed out to sea. 

The Americans with Disabilities Act (ADA) solved some physical issues. Someone in a wheelchair can access an ATM/PIN machine. There are ramps, not always convenient to the wheelchair-bound person who needs easy access. There is still the battle with health care about what one needs or doesn’t need. I hope you’re getting the idea. I haven’t even touched on government issues. In the government arena, it is both good and bad. Oh, do I lump education in with government? It is society.

Then the other part of the issue arises, and this is an emotional killer: a disabled person can be ignored, discounted, not believed, ridiculed, or told that they look weird or act strangely. And, in 2023, the hardest insult of all is “Why were you born?”

Is it any wonder I’m royally pissed off around this issue? No. 

I realize that I can’t save or fix the world. I can only guide someone to a resolution of their issues. I can only do my personal work around my own issues, and sometimes that is a daily chore. So, in an effort to heal misperception, I’ll offer up some tips. 

Nature does what nature does and nobody is to blame but nature. Nature does its own thing during pregnancy and sometimes nature creates a person with a disability, an orphan disease, or a deformity that can’t be surgically corrected. It’s a part of life, and for the believer, God didn’t do this to your child or to you. You are not being punished. Life happens and each of us are the lucky souls that get to deal with what life deals to us each day. 

Sometimes injury happens. Injury can take many forms: a car accident, a sporting accident, a bad fall, a stroke, a fire, a natural disaster, a fight in which one person is injured. Even a person who is trying to protect themselves from danger can make a choice that creates disability. How a person arrives in the wheelchair, deformed, blind, deaf, or brain injured is the backstory that each disabled person must come to terms with.

A good definition for Traumatic Brain Injury (TBI) is a sudden injury that causes damage to the brain. It may happen when there is a blow, bump, or jolt to the head. This is a closed head injury. A TBI can also happen when an object penetrates the skull. This is a penetrating injury. Talk to a competent physical therapist and they’ll be able to tell of ways people get injured that I haven’t listed above. 

We each have a back story: What’s yours? Remember the kid you saw having the meltdown in the grocery store, and the parent just stood there, and you passed judgement? Not so fast! The meltdown may be due to something other than poor parenting. It might be that the child is overstimulated by the environment: too much noise, music, too many people, and not enough brain development to use words to disclose what is happening on the inside. A parent with a disabled child understands that during a meltdown might be the wrong time to swoop in and remove the child in distress from wherever they happen to be at the time of the meltdown. If the parent knows that they could be injured by the child, it’s a hard call. Are you thinking that the parent needs to leave their child home? The parent might not be able to afford the luxury of a qualified caretaker for the time it would take to run all the errands in the universe. This might be their only option. 

Once, while on a chat site, the issue of getting hired came up. The person wasn’t hired because the company want “that weird-looking person working as the receptionist”—a job that this person was qualified to work at. When companies hold this attitude towards the disabled, they drive the person to a place of unemployment. If a person with a degree can’t become employed, what do they do? If they try to get government assistance and are told that they fail to qualify for benefits because they are employable, what are they to do? If they make the effort to work with a job coach, and the job coach has little to no training in working with the disabled population, where does this person go for help? They wind up in chats, the crazy builds, the anger builds, and those who can are told they can’t. This is an issue! 

Money doesn’t grow on trees, and a government can’t finance all of it. True, and companies could do better as well. This issue is for another post. This is complex. None of us live in a utopia. Some of us are able to create a supportive village that can lend a hand. If it takes a village to raise a child, it takes the village reaching out the greater community to assist with those who are disabled in our society. I’ve only touched on a few key points here. 

The village is where it begins. Maybe someone in your village can begin by writing letters, making phone calls, and learning how to assist with the disabled child or adult. Offering to understand the backstory, the lack of resources, and the battle that a parent might be fighting between working and caretaking are all good steps to understanding the meltdown in the grocery store. 

Why do I have anger issues around disability? Because there are not enough caring villagers who will stand up and lend a hand. Please, become a caring village member and find out about someone you might enjoy knowing. 

Dec 16

Thanks, but Not This Gift

Late Wednesday I asked Jon: “If you could give me a gift, any gift, what would it be?” I wasn’t ready for the reply.

He told me he’d give me a healthy body. He told me he would want to take away all my discomfort and give me health, and I was stunned silent. Two days later and I’m still stunned.

I’ve had this petite, not-quite-a-gem of a body for 56 years now, and while I don’t appreciate its lack of functionality at times, I still love being petite. It is who I am. I love my blue eyes and my once-curly hair. I don’t like the PXE (Pseudoxanthoma Elasticum) that has made life hard. No, I don’t like that at all.

I’ve made the comment before that if I could see normally, I’d want to play tennis. That would be first on my list of items to do. That is just a thought and a desire, but when I think of things in terms of my entire life changing, I have cause to rethink. Doesn’t everyone want health?

About two weeks ago, my family found out my younger brother might be facing some serious heart surgery. He, like me this past year, had to come to terms with his own mortality. It changes you and causes you to rethink who you are and what you do with your life. Things that didn’t seem needful take on a new view. In this past year, the things that really matter to me have changed.

As much as I would like health, I’m going to decline the gift. It isn’t that I’m not moved by the thought; it is that it would change some things. It makes me think of one of the most powerful “Generation” episodes of Star Trek, and the lesson that it teaches.

In the episode, Jean-Luc has yet another encounter with Q. He comes to understand that the lives we live are due to the choices we make. We walk the paths we walk because of what we either do, or fail to do. I may not like the hassles that my lack of a healthy, functioning body brings to my life, but without it I lack the knowledge and power that its lessons have taught me.

Instead of pontificating on all the lessons I’ve learned (and I could do just that ), I’d like to ask you each some questions: Would you change your life? Would you alter it so radically that the lessons you have learned now would change? Who would you be if you weren’t this current “you?” How does thinking about this alternative “you” change who you are going forward? Why would you make the changes? What would your reasoning be?

The offer of Jon’s gift has made me look at myself and accept that I’m OK with the mess of my disability. I’m more accepting of it than I thought I was. I like me. I may not always be happy with life, but I like my life lessons and am glad I’ve had them to shape who I am.

I will return to the gift of health. It is a good thing to ponder and revisit because it has made me think about my life in new and better ways.

In asking myself the question, I found another gift. This gift is that I like being Gail. I like some things about being who I am with my own disabilities that I didn’t think I was happy with. Thanks, Jon.

Dec 9

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Dear Parental Units

Dear Parental Units,

It seems that I’m the recipient of an opening in the space-time continuum, and being as I’m a very brainy baby, I’m going to take advantage of it. I don’t know how long I’ll have to say all of this, so here goes something!

I just popped out and I know you are so glad that the pregnancy is over, that you are through labor and delivery, and that I have ten fingers and ten toes. My head looks normal and I’m breathing and crying. All is well (for now). Enjoy the next six weeks because after that, you all are going to enter a world that you don’t know you are unprepared for. Good luck—we’re all going to need it.

Six weeks from now, Mom, you are going to decide to take me to the pediatrician because my eyes don’t look right. I’m not tracking stuff, and you and Daddy are concerned. On that day, you are going to get a bucket of news you are not ready for. I’d have liked for both of you to go instead of just Mom. You see, if you both hear the news together it will be better that way. So many times mommies have to hear difficult news without daddies being present, and that isn’t right. I can tell you that getting your kid diagnosed with disabilities is bad enough, but often it is the mother who hears it first, on her own. Even though the woman (yes, in 1959 you won the doctor jackpot and got a woman) is going to spend time with you, remind you that this is not your doing, that you had a very mild case of rubella and nature happens, and she’s going to try to help you deal with it all in one day, I’ll tell you now that her good intentions won’t do the trick. Don’t feel bad. Doctors still don’t get it, and in time I’ll come to have friends who are doctors and they’ll validate this fact. Talk about it and help others to go through what you have been through. Sharing will be good for you and others.

So, take me home and get that home nurse and learn and enjoy having me. Let me explore, and let me be the happy soul I am. Let me grow up in the loving secure environment you both want to provide for me.

I Can Feel That I’m Getting Older.

Now, growing up is tricky. You are going to want to shelter me from bullies, failure, and all things that go bump in the night. Unfortunately, you can’t. You are going to want to hide when I come home from school crying because of the bullies. I need you to put your arms around me and let me know that you love me, and when I shed tears, cry with me so that I know it is OK and that you hurt with me. That would be the best!!! But the era you are raising me in will teach you differently, and you will hide the pain you feel. I’ll grow up and gain insight into this, and it will be alright.

While I’m on the subject of things that hurt: Don’t trust caregivers. I know that in the 1960s you won’t think that your daughter can be harmed by any form of abuse. The disabled are hurt by angry people and sometimes well-intentioned do-gooders who should not be allowed to work anywhere near them. I’ll be hurt, but I’ll get through this as well. All three of us are victims of having had this happen to me. You didn’t know, so don’t feel guilty over not knowing. When you do find out it will be because the time is right and I will heal from past pains.

I need to tell you that you began to do some good things for me in the late ’60s and early ’70s. You need to pursue those things even more and give me the jump-start on my career planning, and help me to see that I can reach my dreams. Just because I’m disabled doesn’t mean I can’t achieve what I want. I know my limits and I don’t need society putting false limits on me.

I’m Feeling Even Older as I Write This.

Dad, you and I are going to turn out to have passions in the same areas. Social injustice is something we will both come to understand. I’m glad that you will work with, and respect, women. I’m glad that you will be open to that.

Mom, you are going to wind up raising two daughters who have health issues. It is going to change our family. I’m glad you will have Joyce because she’ll be things I’m not. She’ll be easier to raise—trust me on this one. We will both cause you and Dad to grow beyond what you ever thought you’d have to do, but in the end it will be worth it.

As I grow up, I’m going to want to do it all by myself. I’m going to want to be just like the other kids. This is going to be hard on you, Mom, especially because you and Dad decided you’d stay at home with the kids while we were growing up. He won’t be home as much as you might like for him to be, but I know that you will tell him everything and he’ll be in the loop. But, back to the being like the other kids. This is something that many disabled kids feel, so try to understand and let me do it myself unless I ask for help. Let me struggle some and then gently offer, even if I make a stink. I’ll understand when I’m older and all grown up.

You should put me into Girl Scouts. Give me outlets that will help me to make friends and to achieve goals. This would also help society learn that the disabled CAN participate. This is very important for girls!!!! This is something you won’t think of doing, but I wish you would. I can tell you this because it is something you would think of if I had been born at a later time.

Help me discover who I am as a young girl so that I can grow to be a strong woman. Putting me in dance and swimming lessons is going to help me to become more coordinated. It is also going to fill my intense need for being in and near the water. I’ll learn from these, and even though the dance will be hard, it will plant some seeds.

I’m going to have insight into what I need. Listen to me because others won’t, and as you support me you can know that I appreciate the fact that you value who I am. I’m going to raise a wee bit of hell along the way and you two won’t understand it, but you will accept it and love me.

When I reach my teen years I’m going to struggle with who I am becoming as a woman. Part of this is normal for all teenagers, but there are special issues that are associated with disability. How I wish someone would author a book about this stuff so you both could read it! Unfortunately, there won’t be a book. Maybe in time I’ll write that book, or maybe someone will beat me to it.

Early on in life you are going to turn me on to books and I’ll devour them. I thank you now for this gift. Reading and learning will be one of my great joys. It will allow me to stand equal with anyone.

Oh, Something Is Happening

Mom and Dad, I’m going to thank you, now, for all the time you will give to me. Driving me when I can’t drive, reading to me when my eyes just can’t see straight, and staying with me when I freak out because the depth of things is hard for me to see. The times when you have held my hand and helped me navigate going down to rivers, and other hard-to-get-to places, will be appreciated. I’m going to thank you for trying to keep the family in “normal” mode and doing things that my siblings enjoy. They will need that.

Dec 6

Night Walk and Maira

I guess you could call today “Maira Eve,” and as I have been thinking about my life and events that have led to this very day, I thought I’d update the original posting. This post tells of how I came to understand that I needed to have a dog.

For the past four years I have referred to Maira as “Eyelette,” as all things living need a name. I’ve even had a tiny transitional object to pull out of a drawer or set upon a desktop when things seemed grim. Right now it just seems surreal. This REALLY is happening!!

It has been a long journey, and tomorrow at 0930 I will be at KNGF to begin my two-week intensive work of becoming a partner with Maira. What is in store for me? I don’t fully understand at this moment. I am packing my bag and will find out in the morning. So now for those who will walk with me and remember that night of several years past…

Night Walking

Late this last November, I found myself waiting for my husband; we were to meet at the shopping area. My iPhone went dead and I was scared. It was dark and windy, and I knew I’d have trouble walking anywhere alone. I almost left the stairs, where I was sitting in hopes that he’d look for me there, to go look for our car. I should have known that the car was there—where it always was. But fear kept me on the stairs. Had I left, I’d have found the car—and safety. I was to discover that I had been doing a dangerous dance on a rooftop with a skylight.

I finally decided to walk to get to the bus. I was scared. The thing about being half blind (or so I thought) is that bumps in the sidewalk aren’t your friends. Bumps can really hurt you. So I walked in the street, but then the streets here in Europe can be bumpy as well. The streets everywhere are bumpy. It just doesn’t pay to try to stay safe or sane when you can’t see the road. I was walking SCARED. In my mind I was dancing on a skylight and trying to calm myself and telling myself that I would be just fine. I was scared because about ten years ago some nut with night blindness hit me and I fractured my L1. I was scared for some good reasons. In feeling the fear, I realized that my vision was far worse than I had ever admitted to myself.

Normally, husband is my “Seeing Eye Hubby,” and I depend on him. But hubby was in some unknown place and I was scared. I was all alone, and there was no one to help guide me. I made it to the bus, which was a good ten minutes’ walk. Then I had to face the walk home, which in many ways was even more terrifying. You know you are severely low vision when you have a dark street with a dim light and you think that you know the road but don’t know where the bumps are. All at once I realized that I didn’t know the road at all. I had to make a decision: walk fast or walk slow? I just walked. All I wanted was a phone and a warm house. More than that, though: I didn’t want to fall on my face.

After what seemed like a horrible forever, I could see the house and then the car and the door. I crashed through the metaphorical skylight. The tears and mixed emotions exploded within a safe house. I was grateful that I had made it home. Jon, who was upset and concerned, came to me. At that moment I realized that I would never feel as safe as I once had before. That crash was just the first.

Life can be a terrifying dance routine with a choreographer gone mad. That is when you slam through the skylight. This is when your soul sinks and you discover that you are frail. Then, and only then, can you realize that you have been dancing on a rooftop with a skylight.

In the next days I began the search for the “doggie” school. After a week of looking, I knew that I needed to approach KNGF. I made the call. The darkness has served as a reminder that I am not safe. The naive woman who was dancing on a skylight is no more.

Today

Jon is downstairs cooking dinner and I am wondering what will unfold next. As I look back over the past few years, it has been quite a ride. The Loo Erf, the beginnings of a new private practice. It will be a new dawn in the morning. I can’t wait!!!!

A Sad Update

I am going to post this to my blog because it will reach more people faster.

On Monday, 23 June, I went off to the KNGF with high hopes. Maira is a great dog, but she will not be mine. On Thursday the 26th, I was admitted to the UMC-Utrecht neurology unit. The short story is that after all of the time I spent planning, I can’t have a dog.

I am totally bummed and depressed and feel like a piece of my world got yanked out of my life. It did. But, I will move on. For now, it is important that I accept and take the time to cry tears of sadness.

I am thankful for some great doctors. I am thankful that I am alive, and that with care, I can stay that way. I will say more later. For now I am just trying to enjoy my first complete day home from “the big house,” as Jon and I call it.

With much thanks for support,

Gail