Disability Defined

My disability has added a second disability, my back. I have a ruptured disk for whatever reason we, the doctors and I, have no clue what happened. The theory is that a cycling accident I had a number of years ago was the catalyst event. It really doesn’t matter, my back condition is painful, debilitatingly painful. The pain impacts my ability to work and do the things I want to do. This pain on top of the pain from my blindness is sometimes parlaying.
I bought a book, “The Pain Survival Guide”, the book is totally focused on an action plan for managing pain. I’m noodling through it but have found it compelling and have applied the approach to disability. The authors have done on of the best jobs I’ve seen of describing the condition of being disabled. Its very possible there will be many blog posts based on my notes from reading the book, “The Pain Survival Guide”. My notes are focused on disability and pain management, for me. My blogposts are my interpretation of the points made in the book to manage pain, I’ve extended the thoughts and applied them to disability, which involves pain. Get the book and here are my thoughts based on reading it.
 Cast Away
As a disabled person its very easy to feel like the cast away that everyone, family, friends, medical professionals, has given up on. The major handicap of any disability is the isolation we feel as a disabled person. Left alone in the dark corner to die. Condemned to wither and die quietly, stop complaining stop making noise.
Be Your Own Advocate
You and only you know your disability and its deepest and darkest secrets. You and only you have the voice to ask for what you need to gain the attention necessary for you to live. Learn about your condition be open and honest with yourself. Grieve the loss of your dreams change you definition of success. Learn and understand what you can and can’t do, be honest. You’ll be better off for it and more enabled. Don’t let others tell you what you can and can’t do, if its important to you find a way. Ask for what you need, the worst that can happen is that someone will say no.
 Sally Can
Don’t get caught up with what others can and can’t do even if they share your disability. We are all individual we are all born with our own talents, strengths and weaknesses. Your experience with your disability is your own. You are the expert on you, if you’re not become the expert. Your worth it.
 False Expectations
Don’t let others belittle you. Don’t succumb to, you’re not as disabled as you would like to think you are, or you can do more than you let on. Don’t get stuck into this. It’s a profound form of discrimination practiced by many family members and medical professionals. In the work world many managers will do the same thing. Just because you did something once or in the past doesn’t mean you can do it every time or now. You’re not a circus clown performing. You and only you know what you can and can’t do. Unfortunately, the definition of what you can and can’t do is a moving target depending on your energy, pain and fatigue levels.
 You Embarrass Me / You Hurt Me
Others will try and sweep your disability under the rug because they are uncomfortable with it, don’t let them. You have to have as level a playing field as possible, honestly, disclosure, discussion are always the best approaches for what you can and can’t do, defined only by you.
 The Dark Side
Don’t allow those people in your world that will use you so they can feel better about themselves. Its sometimes a fine distinction, people generally want to do the right thing, they want to help. Keep it there, if they want to help its one thing. If they are helping you so they can feel better about yourself these people will limit you so that you are dependent on them permanently. Don’t enable someone else’s disability.
 Over Protection
Don’t allow those well meaning people to limit you. Don’t let others tell you you can’t do something or shouldn’t try to do something. Life, meaning, achievement are all about the journey the effort, energy, passion, and pain you put into something to achieve it. Without effort, energy, passion and pain life can have no meaning. Put quality and meaning into your life, always.
 Being Blue
Everyone gets anxious and depressed all of us are afraid or hurt from time to time. You will get depressed about your disability. You will blame everything on your disability and get angry at the things your unable to attain or do because of your disability. Depression, anxiety, fear, are all good indicators that your alive and well. Cherish these feelings don’t wallow in them, you’re not a victim. But know that if you weren’t feeling them you wouldn’t be alive. Grieve and move on. Your entitled to all of your feelings: shame, embarrassment, anger, guilt and love, happiness, joy, exaltation, pride. You’re here for a reason.
 Build on Success
The focus is always on what you can do not what you can’t do. We are all alive and living, we all have something to build on, some capability, some talent, some ability. Build on it. If you didn’t have something, you’d be dead. Don’t focus on the things you can’t do. Focusing, on can’t, is the road to hell, its very easy to devalue yourself, wallow in your disability, get depressed, give up and become totally isolated and die. Don’t Do It!!! You’ll find out that you can do things or parts of things you just do it differently.
 Live
Just because your stuck with a label of being disabled. Sometimes others know you are disabled and sometimes they don’t. Learn to disclose and advocate. Learn to learn to work, learn to play. Put purpose and quality and meaning into your life. Its all up to you.
Pointing Fingers
Don’t focus on what caused your disability, you disabled. For some of you there may be a cure and for some of you you may want that cure. But for those of us where there is no cure its up to us to manage our disability. Who cares where it came from and what caused it. It is what it is, get on with it. God is not pissed at you, you’re not being punished, your here for a purpose.
 Managing Your Disability
It’s the subtle and sublime that will cause you the most frustration. You have to learn to identify the factors, the contexts, the things that impact your disability both positively and negatively. It’s a constant learning but once you have a process in place for finding what works and what doesn’t you can make the choices to focus on what works.
 Don’t Wait For Science
There one day may be a cure for your condition that causes your disability. The disability doesn’t define you. You have to live and not wait for doctors and science to solve the problem for you. Its up to you go and do it, NOW!!! The question always is what are you capable of and what are you doing with it to add quality and meaning to your life. If you’re waiting around for someone else to own and solve your problems you’re waisting your time. Move along.
 Get on IT!!!