Independence For All

What Is Independence?

September 19 1984

Independence is a precious privilege not all of us Americans get to experience in this land of the free and home of the brave. Many people with disabilities need physical assistance in completing their daily concerns. Personally. I have suffered many hours of cold feet due to my feelings of embarrassment when needing to have someone else put the socks on my feet and on my shoes. Only family members or the very best of friends were ever allowed that privilege of helping me and never within public view. For me it is still a choice between cold feet or no cold feet. I have learned many new lessons. The best of which was the difference between "want" and "foolish pride." For many others the choices are much higher and so are the tasks before them that need to be done. A little help from a supportive aide means all the difference. You'll never express a greater loving of accomplishment than seeing someone accomplish something he couldn't have done without you. It's a wonderful feeling, Try it!

Awareness Exercise

December 14 1983

One of the issues brought up most frequently in my column has been accessibility. The importance of the issue is the necessity for stricter enforcement of the laws and building codes ensuring it. and depends on how much freedom and independence means to the individual. Or possibly "what" those two words "mean" to the individual by definition.

It is not uncommon for some people to take their physical agility so much for granted that they automatically assume you are referring only to an independence of attitude or political belief and a freedom of speech. The realization of physical entrapment seems absurd, "especially in America" if the entire concept hasn't escaped them already.

Most people do not fully appreciate the seriousness of the issue of accessibility or inaccessibility until they are personally inconvenienced by it in some way. Unfortunately it is usually a bit late by that point.

I spoke before the membership of the Milford Jaycees and we focused on this. I had passed out copies of a questionnaire that I made up dealing with general information about themselves and their lifestyle such as: their age; occupation; mode of transportation used to go to work; marital status, # of children, what their hobbies were that they like to do most often and to do and whenever they had spare time. They answered questions about the architectural construction of their homes and workplaces as well as the physical description of the layout of their home living and office environments. For instance, did they live in an apartment or a house? How many floors? Are there stairs leading up to it? - If so how many? Do you use an elevator? - Are the elevator button panels lowered to meet code? What kind of doors are on the building? Are they heavy? How high are the handles? Are there ramps for stairs and curbs? How many bathrooms up or downstairs? How many bedrooms up or downstairs? Was their own bedroom up or downstairs?

How much maneuverable walking space was there in bathrooms, kitchen and all other rooms? Enough that someone in a wheelchair could move about the house or office unhindered?

What is the average heights of cabinets, mirrors, closet poles dresser, light switches, outlets, bookshelves, stove, oven, countertops, refrigerator freezer, tables, desk, file cabinets, telephone, fuse box, TV, stereo, sinks, coffee machines, towel dispenser, soap dispensers, knobs / locks / latches?

Does the workplace have accessible bathroom facilities. Does the workplace have handicap parking spaces? Are there any disabled people where they work? What positions on staff do they hold? What physical restriction do they have where restrictions are only caused by the set up of the working environment? Could you keep on working your present job if suddenly disabled permanently in the future? Would you be allowed to?

Could you continue to live and would you like to live the lifestyle you do now if you were to suddenly become disabled? Why/how? Why not? Basically this was an awareness exercise for the gentlemen, making them see what their present situation is and how much it would have to change if anything should go wrong for them tomorrow.

Interestingly the majority didn't feel that they could cope or "handle" the entire ordeal. Many weren't sure whether or not they could or would even want to continue the lifestyle they have now regardless of being able to keep their present job.

Another rude awakening was that set up for that most government eligibility requirements for state programs that assist with accessible adaptations for the home, education and rehabilitation. To be eligible for any assistance of this kind you can own nothing - turning property over to the state and dissolving any large bank accounts. Financially people become strapped.

It is impossible to be middle class and handicapped today. There is no accessible housing available unless you are low income or can afford the penthouse luxuries.

Helping to build a successful community is comparable to taking out insurance policies aren't active, productive and happy future for yourself and the people you love. You can take it can take it from someone who lives there, the life isn't so bad. In fact it can be afraid darn wonderful if you look in the right places, but you have to WANT to.

Handicapped Accessible World

January 30 1985

Hello Readers,

The lack of accessibility sticks out so badly that no matter which way you turn you keep bumping into it. This has been called "a tender area." Well, sure it is! If you keep bumping into things long enough you could become mighty sore.

That old "inconsolable roadblock" keeps popping up in the way. Sometimes it only holds up your parade. Other times it stops you dead. Always it aggravates the crackers out of you.

Those who are unrelated to the entire world of a disability and have absolutely no personal contact with someone disabled have their own patched together version of the issue of accountability to go by. So, I've tried to look at it from that viewpoint at that viewpoint for a minute.

Sure, their are other lot more disabled people around now then when I was younger. Just look at the great success of the new Connecticut Post Mall after it's renovation and accessibility provisions were made throughout. The disabled are shopping freely, happily and independently – and no one is batting an eye anymore! Only goes to show that if the extra provisions are made, they are in gratefully appreciated and used to the merchant benefits. It also shows that once an oddity becomes a daily occurrence it is no longer an oddity and an unknown phenomenon.

Looking back, things never seem so bad to me, but then mine was never a disability that dealt with mobility concerns. There are without a doubt more disabled talk visibly about in the community today than ever before. Over the years programs were started that brought the physically disabled children in the world of academia, developing their knowledge of life's choices and refining their tastes to the perfection of their own desires for life they chose to pursue as adults. College campuses were made accessible and higher level achievements were made possible for them, specially as preparing for a career.

Huge vocational and physical rehabilitation centers were opened helping to support and guide the newly disabled look to the role of active participation in the mainstream of society. Government grants and programs were set up for adaptive changes. Automotive industries came out with with adaptive equipment suitable to just about anyone's problem giving him the freedom of the road - for the right price of course.

OK, OK! Picture thousands of highly educated bright-eyed, ambitious, … you name it people, young and old. … all rehabilitated and independent minded. … Got that pictured? Now you tell them, where's the accessible housing? Job site - if opportunity is even available? Money to buy the automobile? How about Mom and Pop's house? Is it accessible for them? Are they economically eligible for anything offered to assist the disabled by the state or federal government?

Picture the 35 year old construction worker, pretty wife, three children, and a brand new life as a paraplegic. How is he set financially after all of his medical insurance coverage runs out and he still has to go through therapy? How did his emotional adjustment go? How did the marriage adjust? The children? Where are they able to live now? Is it accessible?

These are only a sampling of the problems involved. Picture yourself in a permanently disabled condition, but still able to function daily. Can you cope? Are you even set up adequately for such a possibility insurance-wise?

Making permanent moves toward total accessibility in our community is a must for everyone's future. It's our insurance policy for a self-sufficient life with a disability or without one. Accessibility isn't only to get into a building or vehicle, it means the ability to be hired and provide for yourself and your family in a dignified and optimistic lifestyle.

The disabled American has to stop being seen constantly as the services and more as a capable service provider. He might be your secretary, your assistant or your boss. He might be you.

I'd Rather Do It Myself

April 4 1984

Dear Readers,

April is Handicapped Awareness Month in the city of Milford. It is only fitting them that the person who is made most aware of a handicap be an April fool model. By foolishly ignoring a doctor's advice I continued to run around on an infected foot until I landed myself in a really awful situation. Flat on my back, foot in the air and totally dependent on other people to help me through my day.

Even though I am able to sit occasionally and hobble about the room to change the channel or to get another book to read, I'm not supposed to. Until I can figure out how to get Medicare to pay for a slave, I can once again be grateful for my big family to have swooped down and taken control of their usually uncontrollable little member. Taking wonderful e and trying to make me happy is their only desire. I've been fluffed, buffed and puffed, propped, plopped and carried everywhere that I've to be moved to.

I am certainly being given a Lord's eye view of what life could be like should I ever become permanently disabled mobility-wise and it's driving me nuts! I am sore, bored and becoming cranky: If I don't commit suicide soon - I'm sure to commit murder!

"Please mother, I'd rather do it myself!" I can calm my impatience though. I know that I will be able to get up and run about on my own again as soon as the infection clears and the cuts heal.

I have been made acutely aware of how fortunate I am to have the use of my legs, I have learned that I am too weak to use crutches and too small for a manual wheelchair. I have learned something else. I have learned that even though I have grown up with a visual disability like Progeria and have become used to turning heads in a crowd - that it bothered me to have people watch me being carried in and out of places! That was a lesson I never would have thought I needed to be shown.

An awareness activity is to spend part of a business day by trying on a disability for a few hours. Try this out and see how our lives and careers would be affected were the disability genuine.

I'd like to recommend that everyone take part in this project. Put Vaseline on eyeglasses and see what it is like to have visual problems. Padding over your ears can simulate deafness. Strap one arm to your side and only have the use of one as a stroke victim might. Close your eyes and try to imagine never knowing what a child's smiling face looks like. Then thank the good Lord that you do.

Offering Help To The Disabled

June 6 1984

Dear Meg,

The other day during the rain I saw a man in wheelchair going up a steep ramp. He was doing it but with great difficulty. He refused my help by saying "I can do it myself." Should I leave him alone or should I wait and make sure he got the ramp safely?

D.S.

Dear D.S.,

The situation which you have described certainly was a ticklish one. Were I to find myself in a similar circumstance I think I'd be hard pressed to just walk away if my concern for the gentleman's safety seemed truly warranted.

Whether or not the weather conditions had added incentive to offering health not only to get up the ramp but to rush between the raindrops as well, the reaction you received from that disabled gentleman is not an uncommon one.

Assertion of independence is a very important thing to most people. It is especially important to someone who is doing battle against the physical limitations and restrictions of a disability and asserting independence in every way and instance possible seems imperative – like hauling yourself up a ramp in the pouring rain letting everyone else run by.

I don't know whether the tone of his reply was a hostile one or friendly but definite rejection of your assistance. On the same count I don't know what the tone of your offer was like – pitying or friendly. Assuming that all went along well. We can only continue to offer friendly assistance when we think someone might like or need it, but when it is refused, we can also only continue to respect each individual's ability to assess his or her own capabilities.

Independence is a funny thing, the urge for it doesn't only come out with the sun. No matter how silly or stubborn it may seem to others at times, the urge for it is constant, rain or shine. The need to do something unassisted even in a torrential downpour may be an attempt to prove some ability to himself as well as to the world confining him.

There is nothing really personal in that refusal of an offer to help. However, you have to read each instance separately because not everyone is the same in the way they are reacting to things in their life. Just ask. The next guy might be grateful to you!

Recognizing Independence

June 13 1984

Dear Meg,

Do you think that there is a difference between the way a man with a disability will react to assistance offered and the way a woman would react to the same?

D.S.

Dear D.S.

It can be a tough thing to interfere with a person's independent streak. Usually more so when that person is new to asserting him or herself. That is most often true when someone suddenly becomes disabled though an accident.

Although I am not aware of any study ever having been done on the subject that has produced such statistics as you are asking for, I do have my own observations to draw from. Based on those observations of my friends, family and in general, the people moving about me - I feel that it is more likely that a refusal of help will come from a man with a disability. The male and female rules in our society - even in these "liberated" days - make it much easier for a woman to fall back on her femininity as a cushion for her independent ego a she gracefully accepts a helpful gesture.

A man with a disability has a conflict of gentlemanly appearance to deal with socially. The age-old acceptance of what constitutes masculine behavior - Machismo, male dominance, protector, chivalrous knight in shining armor, "Stud" - vies drastically with the equally age-old acceptance of what constitutes a person with a disability: useless, "Poor Dear," gimp, pitiable, dependent, unhappy, sickly, - not at all an easy row to hoe for a guy!

I've heard it said that if Sir Walter Raleigh had been physically disabled when he gallantly threw his cloak down over the mud puddle so that the lovely lady would not dirty her dainty satin slippers, she probably would have hurried to pick up the cloak, wring it out for him and - have blown the whole romantic story in the process.

The point of this sarcasm is that all too often the inability to mesh our two images of masculinity and disability into a dignified blend has caused many people to misunderstand the intended gesture of a "gentleman" as is insinuated in the mistake that Sir Walter's young lady might have made had the true tale been given the disability twist. Some people seem to become blinded by the visibleness of disability and are unable to focus clearly on any other quality that is present.

It is true that not every person, physically disabled or not acts or reacts identically to the same circumstances. As a female with a "disability." I've often accepted the assistance of males and females. My personal reaction depends on how the assistance is offered, but in most instances it is well received and I am flattered as a person and as a woman.

It must be difficult for a young and vulnerable man to pull together an image of himself with which he is pleased, still dealing with many of the old stereotypes that are still prevalent. Everyone wants to be sexually attractive. Every young guy wants to be seen as dashing, suave, and debonair by little lady who has captured his fancy. Will she read into his advances what he is intending for them to mean? Hopefully, the work has loosened up enough that you, she will see past the disability. Whether she accepts his propensity, well that's another story!