Managing Your Disability


Disability requires constant diligence, what’s working what’s not working, what’s changed, what can I do to manage my disability differently. It’s a discipline of constant diligence that will see you through.

None of Us Wants be a Burden

We all don’t want to be a burden on others. Having others take care of our basic bodily functions, cleaning us, feeding us, driving us, protecting us. It’s a hard thing to have to accept help. Conversely we have to accept the fact that we do need help and that without others we’d have a different or lessor quality of life then we do with others in our life to share the pain and the journey with.

I look at my own life and the things I wished I was when I was growing up. I wanted to be a fighter pilot, I wanted jets. Or I wanted to be a sniper in the special forces. I’m actually glad I ended up blind if I wasn’t I’d have ended up in an oil field like everybody else in my family. Instead I was the one given the opportunity to totally reinvent myself in a new a funky way. A technology career has been kind to me but frankly technology is boring, people and business problems have kept me interested in recent years. Blah Blah wants the freaking point anyway, well the point is is my disability really hasn’t held me back from my dreams. I am too tall to fly fighter jets, and probably too big to be any use in an elite special forces team. So it was my height that determined my fulfilling some of my dreams, not my disability.

I’ve had some cool jobs in my life and done some really cool things but then and now I’ve had help. I can’t fill out an expense form or a timesheet to save my life. Some corporate systems are arcane and historically inaccessible. I need and ask for help to do my job and get things done. Its been like the company has been lucky enough to hire me and my helper. If I didn’t have the help there are many things in my professional life I couldn’t do. I need help, in more ways than you know.

Inject Purpose and Meaning

Your disability isn’t going to stop you from having a purposeful and meaningful life. Your attitudes and others attitudes will stop you from fulfilling your dreams not necessarily your disability. Yes, there are some things you just can’t do. I’d love to be able to drive out in the country looking at the foothills and mountains hanging my arm out the window of my big ass pickup truck. I supposed deep down I’m a hick, I do like my boots and jeans and hats. Yes, I’d love to be able to drive my squeeze in a convertible having her hair flowing in the wind primping. Your right your disability will impact some things directly, there are times when we can’t do what we want to do. But whats the difference if you’re lovely wife is driving you through the mountains in your SUV or your wife is driving primping, driving you around in a convertible. How sexy is that having a sexy hot woman giving you a ride? There is meaning and purpose in all things that we do, if there isn’t stop doing those things.

Disabled people want to show off too

To be snarky though there are many things I can do that others who aren’t formally recognized as being disabled can’t do. We all have our abilities, talents, capabilities disability or not. Sometimes being a jerk I’ll thumb my nose at those “not yet disabled types” and strut my bad self and show them what I can do that they can’t. But don\’t we all struct ourselves sometimes, look at me look at what I can do. Then don’t we all have times were damn I wish I could do that, disability or not? A little attention, recognition is not a bad thing from time to time. Doing at others expense is wrong. Doing it on your own merits is glorious.

Life an’t passing you by

Life is not passing you by you are not or shouldn’t be relegated to the sidelines because you have the formal title of disabled. Someone tweaked me, all right they pissed me off the other day, someone did a Google search and found my blog using a search phrase, “How to keep a blind person busy”. I feel for this disabled person as the people in their life are clearly handicapping them. It’s so easy for others to marginalize us to handicap us to feel sorry for us; so they can feel better about themselves, so they can feel righteous, so they can feel powerful even though their nothing without us. Life is not passing you by. If it is change your context change the people that are nearest to you. Or shake things up a little and do some self advocating. It’s your responsibility.

Its O.K. to ask for help

Its hard to ask for help. Ugh, actually one of the things I hate the most. It’s so aggravating to be around people that go on and on that you’re not disabled then when you ask for some help they rub your face in the shit. As an aside there was another Google search that annoyed me, “Do blind people get mad?”, ah YES we do. They make sure that you know that your disabled and you can’t do it without them, your nothing without them. It can be a fine line. As I always spout, safety first. It is o.k. to ask for help it is a safe and necessary thing that all of us disabled or not have to do. We all need help from time to time. I’m still a recovering help asker though. My wife gets infuriated at me sometimes because I have to do it all myself and I’ll never ask for help. She’s reforming me as it is safe to ask for help from her. I’ll get better at asking.

Don’t be the victim

Conversely you can’t play the victim you can’t sit there rotting until someone comes and offers assistance. Oh you poor little disabled creature can I help you? Can I rub your tummy? What a crock of poo, get off your butt and go and try and do, self advocate and ask for help when you need it. Never, I repeat never milk your disability to get attention and what you want, that goes for “non disabled” people as well. Self pity is a freeway to developing a healthy dose of a lack of self respect. In other words it’s an easy way to become a loser, disabled or not.

Take the good with the bad

All of us have bad days. All of us have days when we want it all to go away where we want it all to end. All of us have great days, once in a lifetime days of joy that we hope will never end. All of us fell stuck sometimes. Having a disability has very little to no impact on these states of affairs. Life is that way for all of us there are days we can get up and rock and roll, and there are days when we get up and go, we’ll I’m not so sure, or there is no way in hell that that’s going to happen. Its up to each of us to be honest with ourselves on what we can and can’t do and pace ourselves through the rest. Keep breathing, keep moving forward. You have to take care of you. Don’t ever stop because if you stop you won’t get the chance to do it again or it will take a LOT more energy to have the opportunity again. Don’t ever give up on your passion just keep moving forward.

Find a way

There are many things on a day to day basis that I do differently than others do. My last boss at Microsoft was funny he thought that because I wasn’t taking notes in meetings that I wasn’t listening or didn’t care. He thought that If I wasn’t looking straight at you with laser eye lock that I wasn’t participating. When I do the dishes or cut the grass, or clean house. I do it all differently than someone who can see who isn’t disabled would do it. If I’m working with someone who isn’t disabled sometimes it drives them crazy how I’ve figured out how to do things. Sometimes I’ll get accused of not being a team player because I have to find my own way to do things. Well, thats the way it is. If you look around at any team each one of those people has a way of doing things. Their way of doing things may not be obvious when you’re collaborating on some work or playing together but each one has their own way. How do you know that they aren’t doing it their own way behind your back, because they are. Its up to you to find a way to get it done. There will be times when you, can’t, those times will be FAR FAR fewer than you’ve ever imagined but how will you know if you don’t try?

Manage Conflicting Messages

Well meaning people will tell you that you can do this and you can do that and behind your back will do it for you. Don’t fall into the trap of over inflating your abilities because someone else is really doing the work. Honesty with yourself and others is the only policy. None of us want to be living a lie. Some people’s self esteem and self image is dependent on what they can do or how they can serve others. Lovely as this may sound it’s a hell on earth for you both. Run and hide, run as fast as you can and find another friend. Do not pass go do not collect 200 dollars, run or you’ll surely end up in jail. Life is an individual thing if we choose to share our life with someone that’s one thing if you can’t live without helping me, go and get a life. I may love you I may want you in my life but I’m better off without you too, I’m sorry.

Manage your Pain

There will be times when you’re doing something or trying to do something that it will hurt. It’s a hard thing not to stop when it hurts. Pain in of itself was meant to be a warning not to do something or to stop doing something. It’s a weird but necessary thing to do when you’re expanding your capabilities or keeping the capabilities that you have that sometimes it is going to hurt to do the things you want to and can do. You have to learn to differentiate between pain that is telling you to stop and pain that will diminish over time, or have to be managed to get through life. Take it slow and learn don’t stope trying, pace yourself give it a good chance before you decide you can’t do it. It will take work but believe me letting your pain define who and what you are, will leave you like a big lump couch potato, and there are enough of those who aren’t disabled.

 Use Your Head

When you making your way through life and something comes up and slows you down or stops you in your tracks, use your head. Its time to analyze, learn, plan and try again.

  • Did you try hard enough?
  • Did you try too hard?
  • Did you understand the situation?
  • Did you have all the facts, all the information?
  • Do I have the tools, personally and technically to manage the situation?
  • Do I need some help?
  • Do I need to walk forward with someone’s help?
  • Did I stop managing my disability and let a stress or distraction impede me?
  • Am I being honest with myself, is this a thing that I will have to walk away from, drop back and punt?
  • Am I making up excuses so I’ll fail?

You need to be smart be honest, be introspective, look at the situation dispassionately. Hard to do absolutely I can get really ugly when I hit a roadblock in life. Use your fat head and figure it out. There will always be more excuses and an understanding ear when you think you can’t do something, they’re not helping you. Some of my best friends are the ones who have the guts, the dignity, the love enough for me to say, “Get up of your ass, dust it off and try again, who the hell do you think you are?”. Exactly who the hell do you think you are. It’s the same for everyone.

About the Author:

Kyle has ocular albinism and has been legally blind since birth. Kyle leads a very active live and is besides his professional career involved in many projects for persons who are different.

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