Disabled. Welfare. Social assistance. Unemployed.
When we see or hear these words, what images come to your mind?? The able-bodied person never thinks they would be involved in any of these areas unless it was to “help the poor, unfortunate people; food drives, missions, charity work … it makes you feel good doesn’t it! The problem is the smug feeling you get thinking: “I could never end up like that!!”
I was like that once. I left school with a fashion merchandising diploma, ready to take the world by storm! A career woman of the 70’s! I smugly told friends I would always work and probably never marry; I didn’t need a man to depend on or to cramp my style! Independence meant the world to me … self-sufficient and carefree!
Little did I know that in 1984 I would be diagnosed with Environmental Illness. The allergies I was born with reached “overload” and my toxic system began to react to everything. I had to quit nursing school (my career for the 80’s) and become the “girl in the bubble” for a year and a half till my symptoms calmed down to a manageable level. In 1984 I became unemployed, got married, and joined the ranks of the disabled. All that was left was social assistance. There was no choice.
It has been said we (the environmentally sensitive) are the canaries of the 90’s. (Remember, the mines used the birds to check for poisonous gases.) But medical and government departments do battle over this controversial illness. This invisible impairment creates an unusual set of problems. A lot of people figure it’s a big joke … especially when I say I’m even allergic to my husband! (I break out in an itchy rash from the oil on his skin, possibly due to his medication – testosterone.) When I park in disabled/reserved section (I have a legal permit), I am chastised by those well meaning people who see me walk away. Yet, I can go only short distances and must be near my car for the portable oxygen I carry with me in case of a severe reaction, muscle weakness, etc. When I wear a surgical mask to filter pollen and dust I get stared at, fingers pointed, comments like “she’s carrying germ protection to an extreme”, and children asking questions. I like the kids, and take time to explain (on their levels) so they won’t be afraid of someone who is “different”.
The dehumanizing walk through the government assistance program is traumatic and a daily uphill battle. Reams of paperwork for provincial and federal governments all require doctors visits (fees aren’t usually covered for paperwork). The social workers are swamped and if they lose any of this information, you have to go through the process again. Offices are usually in a least two different locations, and not usually in your town or area. The workers take turns passing the buck; you can call only on certain days and hours; phone lines are so busy it can take hours or days to get through, only to be told “it is not my department”. Telephone tag is a common game we are forced to play. The pharmacy doesn’t get paid by government departments for maybe 4-6 months, so they refuse to supply necessary supplies because of the cost. The disability allowance is paid monthly, but never covers all expenses because it is below poverty line for normal people, and disabled have extra expenses. For instance, we must have a car because of my illness and my husband’s Multiple Sclerosis. If we didn’t, we would have to depend on friends or taxis (more $$) to get around because public transit isn’t suitable for our impairments, and special disabled transit systems have their own set of standards and problems.
Do I sound better? I’m NOT!!! I’m frustrated by the system and the years it takes to make even the smallest change.
I’ve learned to deal with the death of my life as I had planned it in my youth. Denial, anger and finally acceptance!!! It was a long road at the time, but really took about 2 years.
I even tried working in the real world again. Self-employed, I thought I could have freedom to have “sick days” and not get fired. But the pressures of public employment increased stress and set me back a couple of years treatment. I don’t like to use the words “sick/ill” because I am basically “well”. I just have a malfunction in my immune system! This helps me deal with life on a more NORMAL level. But it means I’ve take a great dislike to people asking me “How ARE you?” Some days I feel like an outcast … misunderstood and good for nothing. But when I’m around other disabled people, as I was at a couple of conferences for physically and mentally challenged people, I feel at ease, relaxed and NORMAL. It was a very strange feeling the first time. My oxygen tank and mask didn’t appear out of place. No one stared. It was complete acceptance! What a rush! It was then I realized how stressed I was trying to appear normal, I and everyone else. I didn’t need extra stress, so I learned to myself … my best self … which some days is better than other days … but always with a strong inner sense of ME.
You may find it strange, but I’m glad I’ve had the chance to experience this side of life. I have grown and changed in ways I never dreamed of in my youth. I married a man with Multiple Sclerosis 5-1/2 weeks after I met him because he let me be me … independent and flawed, but he accepted me and what I could do, not what he thought I should do. Together we try to help others learn to deal with their impairments and try to work within the social systems to make positive changes.
Belief in a power greater than ourselves leads us to a realization that we are in this world only a short time. As we pass through, our goal is not for wealth, power, or position, but simply to help each other through whatever life sends our way. Independence now means freedom to depend on each others, but in a self-sufficient way. A wise friend once told me “when life throws you a dagger, it is YOUR CHOICE whether to grab it by the blade of the handle”.
I might be tempted to try the blade once, to learn empathy instead of sympathy, but with that knowledge, I’ll grasp the dagger firmly by the handle and go on with LIVING! Disabled is a state of mind, and employment doesn’t always mean a 9-5 job with pay. As my husband Paul likes to quote, “You are the only problem you will ever have, and you are the only solution!!!” (You can’t change other people, but you can control your reactions and actions towards others.)
I am proud to be a member of the disabled community because I’ve learned more about patience, compassion, and understanding than I ever knew before. Those of us who have come to terms with what life has given us show a unique perspective on life, and we are willing to share and live life to the fullest. We can do most anything we did before, but we sometimes have to approach it a little differently.
I’m more at peace with the world, because I can fight it from more than one battleground. My knowledge base keeps expanding and that is my strong soldier. The opportunity to walk a mile in the others persons shoes is my ammunition. The joy in overcoming an obstacle is my fuel. As the battle is never ending, our victories may seem small, but the thrill of overcoming adversity brings inner peace, and the peace in one’s heart is a small start for peace on earth.
Lynn is a member of AEHA. She
and her husband, Paul, are involved with the disabled community through
Top Rod Productions. Through seminars and workshops, they encourage
individuals to focus on their abilities. They also help to enhance
society’s awareness of the abilities of the disabled and through recreation
promote their integration into the community.