Searching for Independence
Enabling fuels dependency and need, lost souls and fear. Individuals are no longer their authentic self, they are products of people dictating when help is needed. There is a fine line between forced help, and needing/wanting help. When is it beyond what is required, to an addiction, to dependent living? Is it a function of the psychological health of both individuals, the giver and the forced taker?
I'm not convinced that the person "helping", realizes the extent of the other's persons hurdles or is it their own perceived limitations? In most cases, on the receiving end, it's easier not to say otherwise. Less fussing and awkward moments, embarrassment and frustration. It's been my experience, especially when traveling that I am thrust into a pre-kindergarten era. A time where everything is done for me, instead of letting me explore, navigate, and learn. My voice is no longer heard, because of my wheelchair. I'm invisible to everyone except my husband, who is bombarded with impending questions from the airport staff. I'm more offended as frustration builds, I bite my lip, and scream inside. There will always be people that insist on doing rather than helping, because they are on a clock. They say "it's my job," so am I supposed to ignore the feelings bottled up inside? When do I get to speak, and be heard?
It's important to note that disabled people initially don't want to be dependent, but over time it's a learned helplessness, and the belief that they can't function on their own. Time and time again, people would rather do, instead of waiting for the slow poke (me) to finish. I feel like a broken record, insisting that I'll try. If I need help, I will ask! Do able bodied people think disabled people are mute? The only way is to be upfront and honest, yet certain people are still inclined to think, "there's absolutely no way you can do it". That's where you almost have to be rude, sometimes even bitchy. No, not everyone is difficult or ignorant, but society has a lack of knowledge for inclusion of all abilities. I am speaking for everyone who is unable to fight for equality, whether by choice, learned helplessness or due to their declining health.
Close family can often feel guilty if they don't take over, they assume instead of asking. It causes frustration, and a complete breakdown of communication. I mentally block myself from the world, as I'm first annoyed, then self-pity sets in. Frustration builds on both sides, before an argument ensues. This could all be erased if I felt like an adult, where my views and opinions are taken seriously. Yes, everyone has their limitations, I am just wanting to preserve my rights as a human. Everyone deserves free speach and choice, disabled people included. The feeling of not being alone, ever, because your husband/wife feels like it's his/her only choice to taking care of "YOU". What if you need to be left alone for your sanity? I value my alone time, and desperately need to be heard.
I need to prove to myself, 1) that I can do it, 2) proving it to others and, 3) building the confidence in myself. I won't accept having my opinions skewed, to make others more comfortable in any given situation. I have lost to much, without losing yet another function, to people who perceive I can't. I will just scream louder if need be. If there's one thing I've learned from being in a wheelchair, it is that you should never live life under someone else's perception of you. I have struggled with doing the things that I want to do or accomplish because people believe I couldn't, so I didn't.
In hindsight I recognize now, it's a self forfilling profecy. I lived my life in the shadows of able bodied individuals. I know they thought they were being helpful, or felt obligated to intervine. Either way I am a person who would appreciate to be asked, then I could have the opportunity to say, "yes or no". It would save a lot of stress and frustration, even anger. I know I can't possibly be speaking only for myself, can I? I fought forever to get a power assist device for my wheelchair, something that I thought would give me a better quality of life. I some how have to fight for the very things many able bodied people take for granted.
FREEDOM, not in a dipolmatic way, the freedom to get out and do, on my own. Once again it was decided by a couple of occupational therapists that I could not manage a power assist device on my own. It didn't matter how I felt or what I said, I wasn't able to qualify for funding based on their opinions of what may/may not happen in the future. Yes I have Multiple Sclerosis, and regardless of not having had an attack in over eleven years, their opinions still trumpted mine. I made it my mission to be accepted by one OT, to be considered for funding. Due to the unbelievably high cost of this device ($7,500), I really needed the government to provide the finances. Finally after months of searching, I was able to find an occupational therapist who would give their professional opinion, that I was able to use a power assist safetly. I've had power assist for six months now, and I feel freer than I have in years. It's instances like these where I feel helpless, hopeless and restricted because others assume I can't. I refuse to let other people decide what's best for me. It's about living the best possible life, believing in myself and knowing my limitations. I realize that I may need help in the future, but right now I'm living for today and choose to live in the present. My perseverance has given me more FREEDOM and independence. I am trying to be the most independent person for my circumstances.
I am more than confident in my abilities and my limitations. When I need help, I will ask, I'm not immune to needing help. But please don't assume I can't, without at least letting me try. I never thought that I would eventually feel this way, but I've done a lot of soul searching and realize that I can't bury my feelings any longer. I believe with any illness/disability, there is a definate process before reaching acceptance. In retrospect my process took eighteen years, before I was able to speak of these views. Some people choose a path that is tainted with bitterness and fear, I know this, because I was one of those people. Living in agony was my normal, nothing seemed good or fun anymore. I essentially was just living, looking in as others enjoyed life. I believe that everyone in a wheelchair should feel safe, independent, and free. This is never more evident than when I travel. Since it is just my husband and I, you would think it would be simple. On the contrary, I feel very dependent and lost. I crave responsibility, and the trust that others can count on me. As it is right now, traveling is a time when everything that has to be done requires help from others. There is nothing that I can do, including holding on to any bags because my hands and arms are busy propelling my manual wheelchair. I don't even feel safe with my purse on my lap or hung behind me on the hand rails. It's not practical or convenient to lug around items in the back of me, especially my essentials that I need easy access to. For me turning my body around, leaves me feeling weak and exhausted.
It is for this reason that I have created the the "Handi Pac" by Advanced Freedom. It is essentially a backpack redesigned for people in wheelchairs, the only bag created especially for a wheelchair user that sits infront of the person. No more needing to lose energy retreiving things from the back/side of you. Safety is no longer a concern by placing things loosely on your lap, when you are concentrating on propelling. The "Handi Pac" will create more independence, and less stress for the person helping. I use the example of traveling, but the Handi Pac would be great when going shopping, going to school or just needing a place to store things. Unlike your typical backpack, the Handi Pac has magnetic buttons where you would normally see clasps, and zippers. It will secure to your thigh area with an easy release seat belt, similar to those seen on air planes. It would run the length of your lower leg (from your knee to your ankle), with an easy access compartment to place your essentials. This "Handi Pac" fills the much needed INDEPEDENCE that I have missed, since requiring a wheelchair. I will be able to do things easier like traveling, shopping and errands. This will allow me to safely and easily, rely on myself to carry things.
Something so small for able bodied people, but huge to anyone using a wheelchair. Traveling now will be fun, as some responsibility is regained. Inclusion is a word rarely spoken about, but it is my hope that the "Handi Pac" will be used to bridge the gaping hole that exists presently. Every person in my circumstance, regardless of the reason will see the benefits of the Handi Pac. Personally, I feel this greater indepedance will give me more confidence to do more, something that I will welcome. I miss the days of having some independence, something that will help to create inclusion, safety and freedom.
If any more information is needed please go to my website: advancedfreedom.com