Simple remodeling

By doing a few simple home up-grades on overlooked items it will lessen the burden later. To live safer and healthier use natural bio-based renewable materials to remodel your home. Plus, you will be saving energy while doing your part to leave a positive impact on the environment.

Well, let’s explore your home. What easy, environmental, and cost-effective adjustments can be made now to help make your home barrier-free for the future?

Cecil Fox, Special Assistant to the President/ CEO of Chimes, a provider of services to people with disabilities and seniors, says, “the purpose of having a barrier-free home is to make the house as accessible as possible for every individual that enters. It is also important to have the house match the environment of the rest of the neighborhood as much as possible inside and out.”

Let’s Get Started

Before anything else the outside must be addressed. Look around the house for loose gravel, uneven ground, or areas that typically gather leaves and water. This can become an obstacle caused by improper drainage. To solve this problem simply redirect your drainage system by using pipes to an area where people do not travel frequently. If ground problems still occur then use erosion protection made out of natural-fibers that are biodegradable, which will add additional green benefits.

Once that problem is tackled the porch can now be looked at. The threshold of the door is often overlooked as a possible problem, yet the solution is quick and affordable. By inserting a rubber ramp under the door it allows an accessible entrance. The best solution is a ramp made from recycled-tire rubber because this material is very durable and slip-resistant.

Find out measurements before going to the store to ensure an exact fit that will allow the ramp to become an extension of the doorway.

A commonly overlooked obstacle is the doorknob. Most open a door without much thought. But, this might become a challenge because of the difficulty of gripping a small object. A simple fix is to replace the doorknobs outside and inside the house with lever door handles. Lever door handles make entry a lot easier and less challenging for little cost to you.

Going Inside

Sometimes because of rain or snow on your shoes floors become wet. This water normally ends up sitting on your tile or laminate flooring in the foyer. When this area becomes slippery it can cause a serious injury if not addressed. Put down a non-slick material that will become an adhesive to the floor. Using a recycled plastic that has an open-weave texture helps eliminate wet areas and adds a design element to your house. This material can also be used on any surface in the house where a hard floor poses a barrier.

You do not want to use a rug or mat to try and solve this problem. They can also become an obstacle. Rugs and mats cause a tripping hazard if not secured down properly.

It is important to keep in mind as you go room to room that the doorway itself can pose a challenge. According to Independent Living, “most standard doorways are 28, 30, 32, and 34 inches wide, but the minimum requirement for a wheelchair is 30 inches wide.” So, instead of replacing the whole doorway use a wrap-around hinge, which allows the door to open wider than the frame.

Kitchen

The most multi-purpose room in the house is the kitchen, so adjustments should be made to fit multiple abilities. Sometimes the most challenging thing is not being able to reach. To increase your chance of finding everything in a quick and easy manner install rotating and pullout shelves. These shelves operate on a single pole with one end of the shelf attached to allow access to the items.

While shopping for shelves ask a store associate if the shelves have a low volatile organic compound (VOC). VOC is used like a solvent to finish most cabinets and shelves; and is used in paint, adhesives, and cleaners. Ultimately the solvent gives off gases that reach throughout your house. Another green alternative to standard cabinets is to place wheat board, a renewable material, on a wall to hang pots and pans for reachable convenience.

Bedroom

This room is normally high functioning for storage space of clothes and other miscellaneous items, so access to these areas should not become a barrier in the future. Let’s take a look at your closet. By up-grading your closet with multiple layer rods and shelves it will give access at every height. A bamboo-clothing rod is a strong durable solution that improves your health by releasing 35% more oxygen than other hardwoods while providing antioxidant properties that prevent bacterial growth.

Bathroom

The last room needs the most repairs and attention because most accidents in the home happen in the bathroom. A major concern is the shower and the temperature controls. It is very possible to accidentally turn the water on too hot and be scalded. Fox comments that in every barrier-free home that Chimes owns and operates for their residents a temperature lock is installed. She recommends placing a lock that stops the water from passing 110 degrees, which will decrease the chance of serious injury.

While examining the shower let’s also look at the showerhead. Be smart and install a hand-held showerhead for future limitations. When shopping for a showerhead look for one that uses low energy to help reduce the amount of power used throughout the house. This will ultimately lower energy bills. The Building Green Product Directory recommends a showerhead that has a “flow of 1.75 gallons per minute or less, well below the federal standard of 2.5 gallons per minute.”

Lastly, around the bathroom grab bars should be mounted to lower the risk of a possible fall.

So, head out to the store!

It is important to plan for your future in many different ways, but making your home a safe and accessible place should be priority. Also, remember by using green solutions you are being a conscious consumer while improving your home.

“Our ability to change the course of the earth’s demise is a staggering responsibility and one that we must address urgently and efficiently,” reports Brad A. Bobbitt, a representative of AmSan Eagle Maintenance a company dedicated in providing green cleaning and equipment solutions to customers.

All the repairs mentioned can be done by one stop to your local hardware store and help from a store associate. It is important to keep in mind that some offered solutions might not be suitable for you, but become creative and resourceful.
Megan Purpora writes about lifestyle and technology issues for individuals with disabilities.
Comments and questions: nathasha@audacitymagazine.com

Balancing Happiness and Necessity

When I was a kid, I could walk. It sounds funny to me saying that now. I can still remember a time in my life when I was not dependent on a wheelchair at all. My unknown muscular condition teamed up with a case of scoliosis, and gradually threw my balance off when I walked. This resulted in my being afraid of falling down all the time, which I often did anyway. So, one summer about fifteen years ago I did what I thought was safe. I sat.

If I was able to think like an adult back then, I wouldn’t have given in so easily. I would’ve tried harder to keep what I had. Any suggestion a medical professional made to me back then was met with stubborn defiance. I thought my doctors wanted me as a guinea pig, my physical therapists wanted to take away play time with my friends at school, and the orthotics department at the children’s hospital was purely developed to wrap kids up in cumbersome plastic casings that caused sores.

In a child’s mind, this is how things can appear. Even worse than that, my parents went along with these terrible suggestions and ideas. They signed forms for surgeries, let me be poked by needles, and watched as I was hauled off to the operating room time after time.

Oh, those were the days.

There were a lot of scary times, but those are in the past now. My childhood was a happy one in general and it took me until I was about seventeen to view some of these circumstances in a more adult mindset. This happens to all of us at some point.

I finally understood why people were making me go through all of these procedures and hassles. I realized my parents didn’t want to sign papers granting surgeons permission to alter my insides. They were only giving these doctors and medical professionals the green light to try to help my physical being.

At the time, what I went through as a kid was seen as ripping away any normalcy I could possibly obtain. Life was “so unfair.” I wouldn’t have said I was experiencing my idea of a quality life. But, what did I know? I was young and didn’t even understand what life was really about. A great day for me as a youngster was riding my little red tricycle and playing with dolls.

For a number of years, I hadn’t undergone anymore planned surgeries. I finally felt as if I was free from the grasp of the medical world. It felt so amazing to be finished letting people decide how they thought I needed to be repaired. A giant weight was lifted off my shoulders. Ah, freedom was sweet!

Then my appendix decided to throw a wrench in the works nearly two years ago. Since my internal organs aren’t exactly in the same places as a text book might illustrate, the appendectomy was not a simple scope procedure. Following surgery, there were some complications with kidneys not wanting to function properly and fluid in my lung.

I think I was seen by five doctors from a bunch of different specialties. Suddenly, I was described as being fragile and weak…two words I despise.

I was prescribed an oxygen machine, scheduled for a bone density test, and signed up for more appointments with doctors I had maybe met once. I felt as if I was right back to where I was before.

When I recovered and began going to all of these appointments, I showed up frustrated at each and every one. There was a question on the forms I filled out prior to my bone density test which asked me why I needed the test.

In my mind, I didn’t need it. I wasn’t some brittle piece of glass. Being the sarcastic person that I am, I answered that it wasn’t needed; I was only there because the doctor thought I was fragile.

In the end, my bone density was normal like I already knew. I should have told that doctor from the beginning I wasn’t going to do it.

Another doctor, the pulmonary specialist, and his nurse practitioner wanted me to wear oxygen at night. This is something I agreed to because it seemed like something reasonably simple, even though I felt I didn’t need that either.

Initially, I was given a smaller machine to use with a hose. Testing of my oxygen levels was prescribed every couple of months as I was told to keep increasing the amount of oxygen I was receiving. After some time, it was suggested I try a larger machine with continuous flow oxygen and a full-blown face mask.

You’d better believe I gave them a full-blown no!

I conceded to trying it out; that way I couldn’t be accused of being entirely disagreeable. It was after I tried it out that I refused the new machine and mask. It came down to the fact that it interfered with my quality of life in some way.

When I donned the mask and my personal care attendant flipped the switch, this eerie feeling came over me. No longer was I lying in my bed at my apartment, but I was transported to a drafty hospital room where I half expected to hear a monitor beeping somewhere over the loud noise of the machine itself. The feeling made me sick inside. Maybe I would sound picky, but I knew I had to tell the doctor and his practitioner I just couldn’t do this.

When I informed the nurse practitioner of this over the phone, she was not pleased. In fact, her tone was almost chastising, as if she were addressing a child. It was stated it was advisable that I not go against their orders because without more oxygen, she informed me yet again of the eventual possibility my heart might work too hard and give out as it had with a close friend of mine who had Muscular Dystrophy.

She even used the line, “You don’t want to end up like your friend, do you?”

That line closed the deal for me. It was infuriating she would even bring that up! I held my position and still refused and told her my reasons. My quality of life is important to me, and if I feel strong and healthy I don’t want to sacrifice time and simple things I enjoy for anything that seems pretty unnecessary. What I experience is vital to my happiness.

I want balance in my life. The state of contentment I currently am in is something I want to hold on to.

What I never told the practitioner was I had conducted a little test of my own with the oxygen monitoring device. I ran a test overnight while on my small oxygen machine, a test without any oxygen at all, and the final night a friend borrowed the unit and ran a test on herself.

Both of my tests were pretty equal regardless of the oxygen, and in comparison to the results of my friend’s test, her results were slightly better than mine. We both thought the outcome was rather interesting. I wish I had a monitor of my own so I could test the oxygen levels of more of my friends!

It is important to get across that I do understand the importance of listening to medical professionals. They should be taken seriously and their suggestions should be considered. There is a line, however, as to the necessity of what a doctor suggests. Everyone has the right to decide how he or she wants to live their life.

The suggestion made to me I felt I could do without, and it would not adversely affect my health in a drastic way. This is the adult choice I made. Other people might tell me I made a mistake, but I don’t think I did. We only have one lifetime, and I am trying to make the most of mine in my own way in order to achieve my own sense of quality and balance.
Questions or comments? Email us at nathasha@audacitymagazine.com .

Raising Pride By Lowering a Table

A few years ago I decided that I wanted an ultrasound of my upper body organs. Several of my friends had been told they had gall stones, did I?

My diet seemed worse than theirs. What about my spleen and liver?

Maybe the approaching big 5-0 was making me paranoid. It had been years since my ovarian cancer was officially considered cured, but if I had caught it sooner on an ultrasound, sure would have saved me from many fretful nights.

Arriving in my scooter (my insurance wouldn’t pay for a power chair) at the ultrasound dept. of my closest clinic, the first thing the technician shouted to me was, “Hey! You can’t bring that in here.”

I protested that I could not walk down the hall to the ultrasound room.

“Well, the hall is not wide enough,” she said, as a large tray was easily pushed right past me.

“Then push me in a wheelchair. Am I the only disabled person you have had in here?” Her facial expression and tone of voice indicated that I was a nuisance she didn’t need. She sighed loudly and called across the hall to a young, tall, hefty man who was repairing a computer. Clearly not a medical employee, she still asked if he would help me into the exam room.

His bewildered look scared me. I had been dropped by my well-intentioned neighbor recently and I did not want a repeat performance. Once inside the room, he began to leave as the disgusted technician said, “Hop up on the table.” What part of “my legs don’t function normally” did she not understand?

“I can’t hop. Look, how long have you been doing this? Seriously, am I the first person unable to get up on this table?” She sighed again, asked the man if he would help me up and he said to me, “What should I do?”

He outweighed me by 100 lbs., was 6″ taller than me…”Pick me up and don’t drop me, my arms are weak and I won’t be able to hold on to you.”

The lost look in his eyes made gall stones seem okay and I regretted showing up. He did lift me, the technician wasn’t happy that she had to turn me, the computer guy wasn’t happy he had to lift me back down.

It was humiliating, degrading, frightening, and so unnecessary.

My own internist couldn’t get me on his table. I had to sit in my scooter and just lift my clothes up. Good thing I don’t embarrass easily. Suddenly I understood why my elderly relatives hated going to doctor exams.

A traveling heart blood-flow testing trailer was coming to my neighborhood. I called to make an appointment, but was told they could not accommodate me. Now I was getting mad. ADA! ADA! ADA!

The Americans with Disabilities Act passed in 1990 with a great hoopla, yet in recent years it seems to be erased from the conscientiousness of most people. Like that one Easter egg that is never found, something started smelling bad. I put off a mammogram because I knew I couldn’t stand.

Let my teeth go without X-rays for same reason. This had to stop; having Multiple Sclerosis was bad enough. The final straw was this year when an eye doctor gave me a prescription that is off the charts. Even though I had called numerous times to advise that I could not transfer, each time I was told, “no problem.” He did not have a chair that could transfer me (and such equipment IS made by a company called, Burton). He did not have a refractor that lowered (I found an optometrist today that has one, after many phone calls). But he was able to give me a bill for $500, plus glasses I cant see with.

Last week I contacted the clinic with the nasty ultrasound situation, spoke to the dept. head. He assured me that certainly the have exam tables that lower with hydraulics. I asked how many they had. Pause. He would have to call me back. (Still waiting) When did you get them? “Um, 1 to 2 to 3 years ago, 2-1/2 years I think.” Yesterday I phoned the Ultrasound Dept. and was told without hesitation that they have no such tables.

On the same day I called regarding the ultrasound, I spoke to the dept. director of practices (the doctors). Her attitude was not as pleasant as the other talking head, and she told me, certainly our doctors have lowering exam tables. “Since when?” I asked. Another suffering pause. “Years.”

“How many?” That answer required another call back.

To her credit, she called back within 15 minutes. “About 2 years ago. And we have them in our budget so eventually every doctor will have one. They are more expensive.” “You have had 17 years though.” “What?” She had no idea what I was referring to. After I explained, she said snidely, “Does it say we have to have lowering exam tables?” “It states that people with disabilities must have the same opportunities for medical care as everyone else.” Good grief.

The good news is the hospital where I get a mammogram now has a machine that can examine while I sit in my wheelchair. (Though I couldn’t get in the front door…baby steps.) I found a dentist who can do X-rays while I’m seated. And the media is picking up on this 17 year lapse in compliance.

National Public Radio discussed the shameful issue on the radio and online.

June Kailes, associate director of the Center for Disabilities Issues at the Western University of Health Sciences in Pomona, CA., did a national survey and found that along with difficult access to MRIs, X-rays, rehab equipment, scales; exam tables posed the biggest problems.

We all must do our part to keep this issue alive. Ask for the equipment you need. Don’t accept excuses. Know your rights. Call around to find a facility that meets your needs. Give positive reinforcement when they do. People are dying because of this simple to fix problem.

We deserve the words of every good waiter: “Your table is ready.”

Comments or questions? Email us at nathasha@audacitymagazine.com .

Disabled Does Not Mean Discouraged

After dealing with vision problems, slurred speech, inability to write with a pen, all the usual Multiple Sclerosis nervous system attacks, one malfunction really got to me: I could not walk backwards.

Now, I don’t know why this irritated me so-but it did. So I practiced over and over how to move backwards. Some days just one foot would move; but, little by little I felt improvement.

Then one morning in broad daylight as I stepped onto the sidewalk in front of my apartment building, I saw three teenagers sauntering my way. I had never seen them before and why weren’t they in school? My folding cane was still in my work bag, the bus stop was around the block, but my gait was slow and limpy. My gut told me these kids saw weak prey.

As I continued towards them, they spread out to form a V and I was moving right into it. As I passed the boy he swung a brick wrapped in a flannel shirt at my back. I turned around facing him. “Give me your money,” he commanded as his cohorts started closing in.

“Don’t do this to me.” I said in a “my-life-is-bad-enough-right-now” attitude. My stupid mind was thinking, “I can take these kids. I’ve fought bigger rats!” My body kept walking backwards towards the corner where a large grocery was and many people would be walking to the bus right now.

I couldn’t believe he kept coming, brandishing his slingshot brick.

As I made it to the corner I turned and crossed the street heading for the grocery. Finally I yelled out, “I’m going to call the police!” I didn’t look back, but they had scattered. As soon as I made it inside the grocery I shouted, “Call the police! I’ve been attacked!” Wow, two clerks ran out after the kids. I had never seen men run so fast before. They saw the kids hop into a taxi. Meanwhile I was on the phone with police and the taxi was stopped one block away. The Medics checked me out, by the grace of God or my guardian angel or whatever (I would be helped again often) I was fine. The kids were arrested; they had mugged an elderly woman two blocks away and were getting drug money for their dad. The brick was with them in the taxi, they had no intention to pay for the ride.

Now, I certainly do not recommend anyone put up a fight with a mugger or criminal, those kids could easily have had a gun. However, by golly, we are not your grandfather’s PWD (people with disabilities). Above my desk at my former job, I posted a sign that some magazine actually published in sincerity: “…people with canes are known to strike out or trip you, so use caution.” The absurdity of it made me laugh, but no more.

Two months ago in the city I call home, Seattle, Washington, a crazed man suddenly began dousing pedestrians with lighter fluid during an otherwise normal busy downtown lunch hour. He attacked two women, lighting one on fire immediately; then he began dousing eighty-two year old Gus Jones. Gus, who is in need of a new hp, was knocked to the ground. He swung his cane and made a direct hit on his assailant’s head, ending the frightening assaults. His courage was heralded by all who watched.

In Feb. of this year a 60 year old Austin, Texas, man was held captive in his home for 24 hours and stabbed repeatedly by a woman wanting drug money. His arthritis was so bad he could not pull himself onto his scooter when the attacker left for a moment, so he crawled to his phone and called 911.

And the recent surveillance video of a 101 year old woman, leaving her NYC apt.

building with her walker, being punched not once but three times, then shoved over for her purse, proves her later comment that if she had been 15 years younger he wouldn’t have gotten away.

Now I don’t recommend the way Margaret Johnson of Harlem pulled her .357 pistol from her wheel chair and shot her mugger, but I hope these events give those who see us as easy targets a reason to remember that being disabled is not for the weak. We are dis-abled, not dis-couraged.

Send your questions and comments to nathasha@audacitymagazine.com .

Being Frustrated, Being Disabled but Fighting Back and Fighting Mad

Like the first day at a new job, I am feeling a bit awkward at writing an article for this Audacity Magazine.

As you can imagine, I have thought of dozens of topics that I think are timely and many that are overlooked but I have been trying to gauge what would be a good first topic.

So, I’ve settled on reality and chose me. Not at all a really bad choice since none of you knows me or so you think.

My name is Rodney, though after years in police work in Ohio, people refer to me as Colonel R. E. Jackson.

Before 1990, I was actively training police officers in Sign Language. It became so popular that a group was formed calling themselves: The Police Interpreters Association.

A group that would earn its title as they began to respond to national disasters in the early 1990’s just to assist the deaf and hearing impaired disaster victims.

It wouldn’t be until the mid 1990’s that I accepted the reality of my own disability which resulted when I suffered a heart attack in my police cruiser. Interestingly and sadly, strokes were to follow.

It was an interesting ordeal to watch because I went from having medical emergencies to having to depend on specialized medical equipment.

It started with a service dog named Lieutenant. I didn’t even know what a service dog was. I was then prescribed an electric wheel chair, then a hospital bed and oxygen.

You would have thought that was enough but then came

the visiting nurse and a daily home health aide. Ok, some guys would jump at the chance to be bathed by a woman but it was just a little too much for me, even though it sounds kind of tidy it wasn’t.

I didn’t know what to do with the service dog because I didn’t like dogs. As for the wheel chair, after driving fire equipment and police cruisers, I definitely couldn’t see myself in a motorized wheel chair that went about three miles per hour.

Since I considered myself a relatively young man, I just couldn’t see the reality of a love life in a hospital bed.

But those were the minor problems, believe it or not.

The bigger ones were trying to take a service dog into a place of business and being shoved, pushed, curse out, threatened to be shot with a shot gun, or the final insult to a veteran police officer, having the police called so they could have me physically removed.

So, while I’m trying to adjust to the reality of my new physical limitations, my new medical equipment, I am being literally torn apart by local businesses because of a silly dog that resembles Old Yeller from the Disney Classic.

Sadly but with a belief in the “System”, I began filing complaints and charges and even had a few persons arrested. For those of you who didn’t know, in many of the fifty states of America, to deny a person with a service animal from entering a place of public business is a criminal violation.

But calling for help and filing charges got me absolutely nowhere. So, remembering my police academy training: When you know you are going to loose, you fight and you don’t stop.

Well, that was in the late 1990’s and I’m still fighting. Interestingly, while I have been fighting, I have been learning about my rights as a person with a disability.

Wow! You would be amazed at all of the laws, codes, presidential executive orders, statutes, benefits, resources, and more that are in place to protect us. Unfortunately, but it seems that the people that seem to have that responsibility to administer such don’t seem too eager to assist us.

Could it be because they aren’t the ones being pushed around just because of medical issues of which they have no control?

So, I’ve become my own best civil rights and disability advocate. I’ve flexed my muscle, fighting over two hundred corporations and it’s been noticed.

I now sit on several Boards and Committees in an attempt to take the fight where it belongs.

Egypt and the Old House

There used to be a house in Auckland Park with a big, green garden and beautiful flowers. It used to have a little wired fence all around it with a gate that squeaked every time it was opened.

There used to live a family there, but they’ve all gone now. Now a tennis court stands where once this little house stood. No trace of the beautiful garden remains, no little gate to welcome old friends.

This was the home of my grandmother, where my mother used to live and play. I remember it well, the stone steps leading up to the front door, the smell of the house once inside.

My grandmother would bake lemon meringues and we’d listen to her old radio. She didn’t believe in television much. My sisters and I would play in the garden, just as my mother and her sister did when they were young.

But as time went by my grandmother grew old and lonely, and at last decided to move away. That was many years ago. She moved to a small town far from here and I have seen her only once since then.

Though she still lives, she has become more of memory than the real person she once was. I try to remember the good times from long ago, but even the house is gone now with only a few photographs to remember it by.

A mother is a child’s center of the universe, the end all and be all of everything. It is easy to forget that she too had a family once, a house and maybe a dog. That she was a little girl with dreams and nightmares and homework to do.

It is easy to forget my mother had a teddy bear to sleep with at night and boyfriends at school. That she was a young girl once with dreams to go to Egypt and become an actress on stage.

But the young girl grew up, got married and became a teacher instead. And even though it took her almost 25 years, she finally did take that trip. From a boat on the river Nile she could at last see her Egypt.

If she has regrets about her life, she doesn’t show it, if she fears someone she loves is in trouble, she doesn’t hesitate to fight.

This being said, I doubt she ever considered her youngest daughter would be born disabled. It was something of a shock for her and the whole family, and even that is an understatement.

A very strong woman, she has fought for me my entire life, she has never allowed anyone to discriminate against me, which leaves me with the biggest irony of all.

In my life, I have had only to prove myself to one person, to show that I too, can have a normal life, and that person was my mother.

She does not believe in discrimination, she herself was mocked as a child for being the poorest in the family. Yet somehow she believes everyone has his, or her, place in life.

Ugly woman will never marry, single men are always gay, white people are always better and disabled people will never achieve what normal people can.

These are all facts in my mother’s mind, and it has taken me my entire life up till now to try and prove otherwise. I think through the years I have managed to convince her that I am not like other disabled people; I will not just roll over and disappear.

Or spend my life thanking everyone for the goodwill shown to me. What she still believes of other disabled individuals however is anybody’s guess.

In a strange way she has been my greatest supporter and my greatest obstacle. She wants to believe that I can make something of myself, but in her heart she knows, or think she knows, that disabled just don’t get anywhere, no matter how hard they try, simply because life is too difficult for them.

It has been hard to except this truth, but it is the way it is and it will always be that way.

I am not an idiot, of course I can understand why she feels this way, and I would probably have felt the same way had I been an able bodied mother with a disabled child.

I think some of my biggest issues had been to get over the jealousy towards my sisters, two normal sisters with normal lives.

I would not like to admit it, but I would give anything to have their lives for just one day. Or so I thought, in the past. I have since realized that looking at me through my mother’s eyes is only peril.

I have my own life to live, and I thank her for protecting me and helping me, but I must learn to grow up and be my own person.

From her I have learned strength and patience, love and understanding. Either because of her, or thanks to her, I have learned to forgive and move on.

There had been times when I wished I could wish myself away, where I could just fall asleep and never wake up.

But those times were long ago, and somehow we all got through them. It was not easy for me, but it was not easy for her either. With no knowledge of my condition she, and my father, have raised a woman who fiercely believes in herself, who loves others completely and knows the meaning of hard work.

My house still stands, but my family have since splintered into too many directions. Nothing is as it once was in my home and I wonder sometimes if our memories will also be demolished one day.

Only to be replaced by a cold tennis court where people come to play, unaware of the happy days once spent on the ground beneath their feet.

Share your story about your relationship with your mother. Email us at nathasha@audacitymagazine.com .

Now You Know!

I live in Rainhill near Prescot, Merseyside, which is in Northwest of England. (United Kingdom). My main shopping area is St Helens Town Centre and Liverpool City Centre.

The title quote came from a remark made when someone aggressively brushed passed me in a store, their reason for behaving this way, was that they did not know I had Multiple Sclerosis. They were promptly reminded that they should obviously be more aware of the fact that there are people young and old with disabilities that may not require walking aids or wheelchairs.

People need to be more aware of the fact that if someone is not in a wheelchair or without an aid, but walking in a slow “unusual” manner that they may be disabled and not drunk, as some people obviously assume. It is a sad world we live in, to think that in this day and age there are many people who have such an arrogant and ignorant attitude to others.

Another interesting story is when someone I know who has MS placed some money in a collection tin for the MS Society. During a conversation the collector commented “You don’t look like you have MS?” What is someone supposed to look like with MS? Grey hair to balding, mid 40’s – late 50’s, wearing worn out jeans and a T shirt or jumper with the words “Fragile” I have MS”, I don’t think so!

It concerns me that in the 21st century people still need to be educated thoroughly about MS and people who are disabled, because they are obviously not aware of the varying degrees of disability. Why is this? Disabled people contribute a lot to the working society. The fact remains is that the world needs to be made more aware of this very important issue and this action should start now!

Children should be educated about all forms of disability, the causes of disability or an explanation why in some cases people are born disabled and why or how this can sometimes occur later in life. At the moment if children are taught about various religious beliefs of different cultures, and they are taught at least 1 foreign language, so why is not more time spent on educating people about disabilities

?

I would also like to see more department stores more accessible to disabled people, (there are not many welcoming signs such as reminders that not all shoppers are not able bodied) considering this has been made law from February 2005, with no apparent loopholes.

After being diagnosed with MS it has made me realise how bad establishments are when they do not provide sufficient disabled access to their shops. Disabled people are customers

On one occasion I tried to get into a store. Well I entered the store with great difficulty. It did not have a lift, only an escalator. I telephoned the store and they said that I could ask for a wooden ramp to be put outside the store to walk up and I was told to ask the security guard to direct me to the goods lift at the back off the store to get upstairs.

I was told by my local association for disabled that at that moment the law stated they must have “Reasonable Access” and confirmed that reasonable access used in inverted comas could be used as an opinion rather than a fact.
He said that what I explained regards getting into the store and getting upstairs (under the law as it stood at the time) could be qualified as “reasonable” and to his obvious frustration he added that they could go to the extreme of saying “you could ask a security guard to pick out a CD for you if you were unable to get in the store.” which would qualify as “reasonable access”.

Going out for the day, wanting to do my own shopping independently, would be robbed from me, having to beckon security guards etc, my pleasure would be taken from me.

Since this incident changes have been made to the law, companies have been given deadlines to meet, as to when they should have the easy access for disabled people. I also contacted my local radio station and the topic was raised on air and the company gave a statement. Still this store may have plans, but sadly in this example these plans have not come to fruition yet.

People need to be more aware that all of the disabled population do not have e.g. walking aids or a wheelchair, which is why we have the majority of problematic situations as discussed; the way forward is to integrate more awareness of disability in our education syllabus.

The Evolution of Ignorance

Evolution has recently been under attack from religious zealots in order to encourage the teaching of a theistic concept called, intelligent design.

This theory of creationism is threatening to destroy the impact that scientific thought and education has on our society and replace it with a fantasy.

Evolution may not be a hundred percent accurate or utterly flawless but the key to having credibility attached to a specific notion is that there has to be an abundance of scientific evidence to support an argument that you’re trying to formulate.

In this instance, evolution would have to be the appropriate and viable option, when it comes to what theory should be taught in our schools.

I’m not against teaching any conflicting scientific thought that may challenge evolution but it must sustain heavy scrutiny in the scientific community and gain the legitimacy it requires to compete with other theories.

We just have to make sure that education is the one thing in this country that stands clear of the mindless propaganda that has been feeding the rusty and corroded apparatus, called religion.

The sanctity of prayer and religious belief has been sabotaged by interest groups and the arrogance of thinking that Christianity is the only religion that’s accurate.

It’s not difficult to see why we’re even discussing this polarizing issue when you have the collective thought that one religion is more accurate than another individual’s beliefs. When you begin to defy common sense and science, we are weakening the progressive underpinnings that made us a superpower.

It is not a shock that in the last few years we have fallen behind the eight ball on education and in the world of medicine. Teaching our young and impressionable that an invisible man in the sky created man and women and calling it a scientific theory will poison their critical thinking.

This will gradually contribute to the long downward spiral that will abolish separation of church and state and transform us into the middle-east.

I am embarrassed that in the year 2005 we cannot draw a line of distinction between simple reasoning and barbaric self absorbing prophesies that can massage the insecurities of someone who is afraid to die.

We have to fumigate the mirror that has been engulfed by a thick grimy muck that has been festering throughout our eternal ignorance and individual torment and stare into it, to unchain us from social slavery.

“The mind is a terrible thing to waste” is an apt slogan for this looming theocracy that can influence

the future of America in a freighting manner and should serve as an anthem to express how I feel.
This is a war that sensible and compassionate human beings cannot afford to lose, and we must not dismiss this issue as politics and sweep it under the rug.

I am proud of the fact that it has been made possible by those before us to practice our religious beliefs without prosecution but it is downright superficial to think it is possible to try to shape society to conform to meet a bogus religious ideal of a fanatic group.

The educational system is already under performing and failing the expectations that the parents have, for what the school should provide for their children, so it is essential to not allow this ludicrous debate over intelligent design to hinder any possible progress.

It’s no coincidence that throughout the violent and turbulent history of this planet, religion is the largest killer when compared to disease, natural disasters or even war, due to division and dissension caused by differences of creed.

We must not continue the trend that has caused nothing but distress and heartache to so many families so let us not raise our kids in this spiteful and ignorant climate.
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Part 2 Journey to Haiti

If you were to ask me to name my favorite place, Haiti would definitely come to mind. It’s in Haiti that I found myself and was able to put my life in focus.

As a young child I saw a documentary on Haiti and it stuck with me into adulthood – it showed a mystical county full of taboo, poverty, culture and a proud, turmoiled history. Many African slaves where brought to Haiti from the port of Benin, Africa. In
the early 1800′s when the slave trade was abolished, the slaves were allowed to remain in Haiti and it was declared a free republic – the first black republic.

Haiti has since been host to terrible dictatorships and natural disasters, resulting from the deforestation of

the jungles to provide charcoal for cooking and urbanization.

Most Haitians struggle to survive on less than a dollar a day, making Haiti the poorest county in the western hemisphere. All of these things make Haiti a top contender for places we don’t really need to see, but it’s because of them that I needed to see it.

I finally made my first trip in July 1999 and I was a little taken back, I wanted to take photographs but felt very uneasy doing so and just spend my time soaking it all in. I came home disappointed and grasping to save the few meager images I did take, but it wasn’t enough – I had to go back and this time it was to make an attempt to be a photojournalist and exclusively document Vodou. July 2003 was the annual pilgrimage to Saut`e deau and Plaine du Nord; they are Vodou water rituals and have great religious importance in Haiti.

I let myself go and started to get more and more involved with the personal moments of what was happening and it lead to a deeper appreciation of what was important in life. Here I am in Haiti, one of the poorest and most feared places in the world; I sit and speak with people that don’t know when their next meal will be, people that could and do die from simple treatable diseases in a country that has been knocked down by every conceivable situation that you could image, yet they are sitting here next to me (a white man) and allowing me into their most private moments. Back at home, my family goes about their day, people go to work in the cool air conditioning, drop by the grocery store for some munchies for their favorite movie, etc., and I am here. Wow, how that puts things into perspective!

I’ve been to Haiti over 8 times and love it more with each trip, it’s a real place and it’s a hard life. As a photographer it’s hard to take a bad photo in Haiti, every face tells a story. I found my photographs taking me to new places. I’ve since spent a lot of time with the various gangs and even the rebels fighting the “revolution” since Aristide’s departure in the shantytowns of Cite Soliel. Cite Soliel is the poorest of the poor and is controlled by violent gangs. Poverty and hunger is a sad fact of life here, many children walk the street with copper hair and distended stomachs from malnutrition, but still find happiness enough to smile and play.

As for disabilities in Haiti and comments on that situation, what can I say, it is what it is; it’s the same as most 3rd world countries. The sad part is always that some of these disabilities come from malnutrition and Haiti will seem to go on as an out of sight, out of mind part of the world.

I hope to use my photography to enlighten society to not only of Haiti’s hardships, but also the honor and pride with which the people carry themselves. Like all of us, Haitians are proud of their heritage, but lack the positive reinforcements due to the overabundance of negative press and superstitions. I wish to change this perception for the good of the Haitian people.
NOTE: All photos are copyrights of Anthony Karen and Audacitymagazine.com

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