This blog is in answer to emails that others have sent to me.
There is a lack of awareness in the united states, they give many treatments but then leave many questions unanswered or in the air and the patients have nowhere to turn or look. There needs to be a list of available resources, a web site you can register on, that’s given out information to you or something like that for help.
One thing about the internet you need to keep in mind is there are a lot of negative people out there, no matter what the case is. There is always haters no matter your condition, when you’re already frustrated and down this doesn’t help. At the same time most disabled people can’t just go to any store or car lot and find the needs they are looking for to be independent. To help themselves live a regular life.
Many people don’t realize that the information they are looking for is there on the tip of their fingers, they just don’t know how to look for it. Maybe some think they can only get it from doctors, specialists, or a resource like that and have to deal with what they get. Well the people that know the resources just seem to only put forward the information when asked for it. When it comes to nurses, doctors, or caretakers most don’t think it being something that you may need or want. See there is still this blindness on much of the world that don’t see the disabled people as wanting much. Out of sight, out of mind! Problem is they can only help you with fact base things, not general resources that are not secured by the laws that support the medical field.
Many people fear the chair, so much that they don’t want to think about it or try to be in our shoes. There are a ton of people out there that want to make things better but they have no idea who they can talk to about it, or where to start to make that difference. I see the question floating about all the time, does being around a person disabled or in a chair make you feel uncomfortable. Well the answer is, Yes for most it does. If someone was sick with the flu you would normally ask are you sick or fighting allergies during this time of year. Then wish them well, ask if they need anything and go on about your way.
It may seem like a dumb and obvious question but generally people are noisy by nature. It’s the same with the chair, people are funny about it; they will wait months they say i don’t mean to be rude but what happened. Most want to know your story. It don’t have to be the full full story unless you want to share it. People can be simple and only give part of the general story; ( car accident, gun shot, war, or even just a accident happened). The way a person answers the question is up to them, This does not mean it’s rude. However it’s up to both people involved to be responsible to back off if that’s all they want to give and not push the person for information not freely given. That is when it crosses the line into being rude. A person who is still angry about what happened that put them in that position or the treatment they have received are generally the ones that don’t want to talk about it; however their are others that will just tell you their story. It’s up to them to answer the question the way they wish. The person asking needs to let things lie unsaid, when the person doesn’t continue or changes the subject.
There are times people look down at me, like they are so much better than I am just because of my injury. Generally they feel like crap, when they find out i’m here in this chair because I took the impact to save a child who walks, talks, goes to school and plays today. Huh, even some still do but I really don’t care what they think of me. You can be perfect in image in every way, where every person admires you, and dying inside from sadness. No I love who I am , I have learned that my chair is only there as a tool to make my life better. It never changed who I am as a person! Only you do that with judgement. I’m not saying this to brag or gloat, I’m not that person. I’m saying this because I see ads and post from people saying i’m ugly because of their disability. When I first got hurt I didn’t want people to know how bad I was truly hurt. So I would post posed photos. I would have someone help me look normal without my chair, sitting in a regular chair or propped up on a wall or sometimes my family would just support my waite and hold me up. So sure enough when I was ready and truly understood the me now I was ok with the whole world knowing and decided I wanted to help others heal and know they have help out there. You are not alone, trying to fit in where everyone else gets to have a life and not you. Here are some resources, some will help others will not. Many of these are closed groups to help keep it in the right people’s needs and for those that do need them.
First no matter what it is there is networks online somewhere, Type in awareness and the need most groups come up from there. The boomers did do a good job there problem is the next generation dropped the ball and needs to be raised again. We got to fight for our needs.
Disability trading zone, disabilities R US, is a place where many people can find things that they need and there are many other resources off that site that will set you in the right direction. You can even just use it to find resources. Accessible travel is a resource for events and traveling for our needs not just another site that makes you feel excluded or way over priced because of your needs. Spinal cord peers has loads of information. Not broken, Amputees, life in a wheelchair, able, anxiety, depression,ms, self destruction, suicide, mental health, disabled veterans,veterans pride. Hope these resources will help you, and that you find the answers you are seeking.Just be you! Be proud of who you are now not the person you were before the accident. You are still that person find that person again you just get to do it from a different view. If you’re in disabled you will find may of your favorite hobbies you had before are still there, see how many you can do the way you are now. I love being active, outside and art. I had to learn to adjust things but I can still do them. I miss running and all never get that back; but now I can drift and do wheelies. One is gone but my family says after the accident they thought good maybe she will slow down. That lasted tell I learned my way in my chair, now however they say i’m faster than before. They say they are still chasing. One sat of kids started calling me the holy roller and it stuck. Is it easy no! Life is always hard no matter what! Its up to you on how you deal with it. Hope this one guides you to your resource the fans have requested. Good luck, that’s all for now. Tell next time with Leann’s blog