The Life and Times of a Person with a Disability

There was once this lady who was just like you and I. The only thing different was her bones and muscles did not work the same. Does this mean that she should be treated different? The world would say yes. What would you say about this?

She is trying to get through life with her disability. She is just an amazing person. She will do anything she can. She will try everything and if she fails she will try something else. Put anything in her way and she will most of the time accomplish it.

One day she was walking down the street when someone walked up to her. He started saying mean things about her. He said that she was so crippled that she could not even get out of bed. This hurt her feelings so much she went to her room and started crying.

She got down on her knees and asked God to help her not be bothered by the crap she is given.  She then went to the Paddock mall. She was walking around and this woman when a big head and a ring in her nose walked up to her. This woman started to tell the lady with the disability that she looked stupid and she should not be in public. The nasty lady got a big surprise when the lady with the disability walked away and said nothing. This lady that took a good jump and said that she was not going to be bothered by what she heard had a great time in her life that said her life would be changed forever.

Now everywhere she goes and when people try to bring her down she just walked away.

This story is fiction but the moral of it is that because people are different, they are not worth it and treated like no one. (race, color, age and gender) Another point is that no matter family, best friend, etc, if they need to stab you in the back to get what they want, most people won’t think twice.

I believe that the end of this world won’t be a ball of fire or even an apocalypse but by the hands around each other’s throats. The only way this will change is that we wake up and start living life like, treating others equal, caring about each other and put a lot of our anger in a hole.

We can have a better life but we have to squeak our wheels no matter how annoying it may be!

Parking to Unload

Have you ever been somewhere and there was a UPS truck or something, parked across two or more disabled spots to unload?

I was at the movies the other day and this exact thing went down. A truck with a trailer was taking up all but two disabled spots. One spot was taken and the other was open. There were other disabled spots across the way that were open but the point is that those unloading trucks, etc. should be parked in an unloading zone or somewhere else.  Definitely not in a disabled spot.

When/if you ran into this, would you report it or would you just get frustrated and move on? What I did was get frustrated and moved on. I did not want to start anything, even though I should have.

The next time, I will complain to the place I am at and call the police to come fine and fix the situation. Heck, if that does not do anything, I will just block the space hogger in so he can’t leave. This needs to change now!

People will do crazy things like this and it is your duty to make sure it does not continue. Did Rosa Parks move to the back of the bus when asked or did she stand her ground and got sick of the way the black community was being treated?

Even the public bus (Suntran) in Ocala was about to get it because even though there is a ramp on each bus, it is so steep that a wheelchair can’t make it up. When I ask the bus driver to give me a push up the ramp, they say they are not allowed. They usually help, but the day they absolutely refuse, I will put my wheelchair on the ramp and not move or park in front of the bus so it can’t leave. I can kind of understand their point for not helping but if you know how the bus is, the bus system needs to change how the lift is or something.

Time to make changes in this world and don’t stop squeaking your wheels until it is done!

Fake Service Animals

If you watch the news you may have noticed the stories about fake service animals.  Based on the analysis of the news reports we have an epidemic of fakers taking their pets with them.

Yes there are a number of websites that will sell anyone a service dog vest.  Yes there are a number of websites that will issue certifications that your dog is a service dot.  And yes there are fakers out there.

Many fakers are easy to spot.  Their dogs are out of control.  They bark and lunge at people.  They pull products off of the shelves in a store.  They are constantly putting their noses and faces up on tables in restaurants.  They may even go to the bathroom in a public store or restaurant.

Businesses already have remedies for fake service dogs that will not behave in public.  The American with Disabilities Act (ADA) allows business owners to ask the service dog handler to remove the dog if:

  1. The dog is out of control and the handler does not take effective action to control it.
  2. The dog is not housebroken.

When there is a legitimate reason to ask that a service animal be removed, staff must offer the person with the disability the opportunity to obtain goods or services without the animal’s presence.

So a remedy already exists for fakers whose supposed service dog is not trained or misbehaves.

Businesses can also ask service dog owners two questions:

  1. Is it a service dog?
  2. What service or task does the dog perform for the handler or owner?

However, it is difficult to determine if an animal is fake based on those two questions alone.  The business owner can not ask anything else.

It is a crime to portray a pet as a service animal both at the federal and at the state level in most states.  It is often difficult to prove that an animal is fake or not a true service animal.

From a business perspective fake service dogs or any service dog that misbehaves or is out of control can be removed from their business.  The law already allows that.

The notion that we should change the ADA law or punish valid users of service dogs because of fakers is something that would be very wrong.  The ADA was purposely written to allow those who need service dogs the ability to use them without a lot of red tape or hassles.

There are groups that want to require certification.  However, no two agencies that train or currently claim to certify service dogs use the same criteria.  Additionally, there are many owner trained service dogs working that do a great job.

Adding certification would add another layer of bureaucracy and also put a financial burden on the disabled, most of who live at or below the poverty line.

Persons with disabilities already have a difficult time.  They have to deal with SSI or SSDI or both, Medicare or Medicaid, low cost housing, and more.  They do not need the extra burden of locating and transporting their service dog to an approved certification agency and paying a fee for certification.  Especially since many with disabilities do not have transportation.

Yes there are fake service dogs.  The handlers should be punished when identified.  But to put more paperwork, cost and burden on a person with a disability because of the fakers, just does not make sense.

At least that is what I feel as I squeak my wheels.

 

The Crisis of the Bearded Man with Cerebral Palsy

Ask yourself beard or no beard.

Once upon a time the bearded man woke up and realized that he suddenly had to use a wheelchair. The bearded man shouted out in worriedness, “How do I shave my beard now?”

The bearded man found a wheelchair rolling his way so he hopped in the cruiser and spun those wheels on to the bathroom. When he got to the bathroom he picked up the only shaver he had, a straight razor, and with his shaky hands went to shave his beard. Out of the bearded man’s mouth came a scream not even the Lady who was hard of hearing could stand.

Blood squirting out of the bearded man’s chin, he wiped off the blood, bandaged himself up and continued to figure out how he was going to shave his beard  without killing himself.

The bearded man thought about himself. “My hands seem to work pretty good, so if I only had something not that sharp to shave.” He kept on thinking and realized that they make an electric shaver where he can smoothly shave himself. He bought an electric shaver, got home and shaved himself. No more beard, crisis adverted.

People assume that people with disabilities can’t do things themselves, like shave. Not every person needs a care person to help them.

I was wondering how a person with no arms wipe there butt.  Like the bearded man, they find a way even if it may take a little longer.

Everyone has their own way of doing things so even though a person has a disability, it doesn’t mean they are helpless, it just means they may have to do things differently to get them done.

Squeak your wheels and get it done!

Myths About Persons with Disabilities

NOTE:  Previous published as an Op-Ed piece in the Ocala Star Banner.  Original can be seen here.

October is National Disability Awareness Month. The focus has traditionally been on raising awareness about persons with disabilities, focusing on the needs for employment for persons with disabilities and improving awareness of the need for full accessibility for persons with disabilities.

Nearly 20 percent of people in the U.S. have a disability. That is one in five, making those with disabilities the largest minority population in the U.S. It also is one of the few minority groups you can join at any time.

Here are some myths about people with disabilities that need to be busted and understood:

■ People with disabilities tend to be sickly. Wrong. Most people with disabilities are healthy. Although some disabilities are the result of illness, the disability itself is not an illness. Oftentimes, the disability is not a medical condition at all. Many researchers and advocates now say that the medical model should no longer be used when dealing with those who have a disability. Rather than finding a cure, acceptance is the better way to deal with them.

■ People with disabilities should be, or want to be, admired. I know a woman who has said, “Do not admire me. The desire to live a full life does not warrant adoration. Respect me, for respect presumes equity.”

■ People with disabilities live completely different lives than the nondisabled. While, in some cases, their lives may be different, the reality is that people with disabilities want the same things everyone else wants. They want to be included, to have a job, a spouse or significant other, family and friends. They want to live an independent life.

■ You should help someone with a disability when out in the public. We all need assistance from time to time. However, do not assume someone with a disability needs or wants your help. People with disabilities value their independence like anyone else.

■ People with disabilities are more comfortable with “their own kind.” That is completely false. Like anyone else, people with disabilities are people and have or should have friends who are similar to themselves as well as friends who are different.

■ People with disabilities need friends. While loneliness and isolation often are the result of living with a disability, they do not want random friends. As one person with a disability told me, “People should not walk up to me and assume they are my friend. Get to know me. We may become friends.”

■ All people with hearing disabilities can read lips. Some can read lips, and many do not. Do not assume they can read your lips.

■ People who are blind develop a sixth sense. Often people who are blind or sight-impaired develop their other senses more than you or I, but they do not have an uncanny or special sixth sense.

■ Wheelchairs confine or limit the activities of a person with a disability. Most people who use a wheelchair do not consider themselves wheelchair bound. It is just a way for the person to easily get around.

■ The only real service animals are seeing eye or guide dogs. The Americans with Disabilities Act (ADA) defines a service animal as any dog that is individually trained to do work or perform tasks for the benefit of an individual with a disability, including a physical, sensory, psychiatric, intellectual, or other mental disability.

■ Service animals need to wear a vest or other identification. The ADA does not require a special vest or identification. Some service animals may be equipped with a harness because of the service they provide their owner.

The important thing to remember is that people with disabilities are people first. They are not their disability, and even though their disability may impact their life, their disability does not define them. Like everyone, they have likes and dislikes. They have faults and strengths. They have dreams and aspirations. They have successes and failures.

Be aware during Disability Awareness Month of those who have disabilities around you. Keep that awareness alive all year by remembering that those with disabilities simply want to live an independent life like anyone else.

Attitude, Attitude, Attitude

The saying in real estate is that it is all about location, location, location.  Something similar applies to life.  It is all about attitude, attitude, attitude.

Having your health is nice.  Having friends and family is nice.  Having money is nice.  Having a good job is nice.  However, without the proper attitude, your life can still be lacking something important.

There have been numerous books written about having a good attitude and how it can change your life.  There are courses and seminars on having the right attitude.  There are those who claim having the proper attitude will promote healing.

Radio and television ads claim that getting your attitude right will make you rich.  Of course you have to pay them to find out how.

There have been scientific studies showing that attitude helps keep people healthy and that they often live longer lives.

If there is so much out there promoting having a good or proper attitude, then why do so many people still not get it?

There can be no excuses.  Being sick is no excuse.  Being poor is no excuse.  Being lonely is no excuse.  Attitude (except in some rare cases involving mental illness) is completely under our control.  Yes, we control our attitude.

There is no need to take a class, go to a seminar, watch someone on television or read a book on how to develop the proper attitude.  Each of us knows instinctively what a good or bad attitude is.  We just seem to choose to ignore it.

For those who are feeling sorry for themselves.  For those who want to give up.  For those who want to focus on their problems.  I say – start squeaking your wheels and change your attitude.

Note:  I do recognize that depression, anxiety and other similar problems do exist as an illness or condition.  In these circumstances and in the case of some mental or physical illnesses the individual has no control over their feelings or attitudes.  I do not include these individuals when telling them to get off their butts and change.  For those individuals I would suggest getting the help that is available and when possible make those life changes that they are capable of making.

 

Slow Brain Day

I call them slow brain days.  You may have them.  Getting up is a little harder than normal.  Starting the day seems like work.  Everything you do just seems to take more time and effort.  Sometimes more time and effort than seems worthwhile.

If my teenagers had tried that years ago I would have told them they were being lazy or they were trying to get over on something.  And they probably would have been.

Now years later, having survived a stroke and having part of my brain die – it is something has happens now and then.  My brain just needs a break so it takes one.

I have learned to listen to my body.  If I am tired at 7 or 8 pm I go to sleep.  If my leg is doing the twitchy thing (that is my legs way of telling me enough) then I sit and let it rest.  So it would follow that if my brain wants to go slowly, then I should take it easy and let my brain have its way.

One of the advantages of being retired and disabled is that I have the luxury of allowing my body to dictate my schedule.  Why push my brain when it needs rest?  I have no pressing engagements.

There have been days that are not slow brain days.  However on occasion my brain will get overworked.  It is not exactly a headache and my brain does not really hurt, but it lets me know it wants a time out.

Anyone who has suffered a brain injury will probably know what I mean.  Those times when your brain just does not want to think, or rather not think to hard.

It is not something that we can control.  We may have coping mechanisms.  We may have ways to disguise those times.  However, the bottom line is that the brain usually wins and we have to give it a rest.  Literally.

This is just one of the many invisible disabilities that accompany brain injuries, both TBI and ABI.  Brain injury survivors have two choices, fight it or accept it.  I have found that fighting what my body and brain are telling me is futile.

I do stretch my limits.  I do challenge both my body and my brain.  However, when push comes to shove, I am overruled.

It is not the end of the world.  Slow brain day, then I just take it easy.  After all I have an excuse for lolling about, part of my brain died.

Previously posted on my blog Part of My Brain Died What is Your Excuse.

Get Involved in Your Child’s Life!

How involved are you in your child with a disability’s life or any of your children?

I am not a parent so I am not coming from a parent’s perspective but I am coming from my own experience. I am an adult with a disability but I used to be a child of course. I went into foster care when I was about three years old and in foster care, no one gave me the time of day.

I was told I was stupid and would go nowhere in life. I was usually told to just go sit in the corner and watch T.V.

Having no support, I basically had no life. My life changed at age 11 because two wonderful people came and adopted me. The Moon family treated me like any other child and knew I wasn’t stupid.

My new parents got involved in my life and wanted me to go places, me too. We fought the school to get me a regular education and when getting nowhere, I was took out and home schooled.

We fought VR to help pay for some of my college, worked to find a way I can move out on my own/be independent and much more.

The moral of it all is that because I had/have parents involved in my life, it helped get me to where I am.

I say help because you can’t live your child’s life, only they can! Talk with your child, find programs and activities that will improve their life, take them to important things and actually get involved. Having parents involved in the child’s life will do much for amazing things and not just for the child but you too and even others.

I found this story online that shows how having parents involved in a child’s life (school, skills, work, etc.) will do wonders. Check it out at http://www.eduguide.org/article/special-needs-children-the-power-of-
parent-involvement

Your child is so important to you and I know you want the best for them, so get involved. You are going to have battles but you can’t give up, sometimes we have to squeak our wheels so many times before something happens but don’t you dare quit!

Handling an Access Problem

As a person with a disability you will experience an access problem At one time or another. I use a service animal to alert me to certain medical issues. The ADA, Americans with Disability Act, protects my right to have my service animal accompany me when I am out in public.

Most states also have similar legislation protecting my access rights with Maggie my service animal. Persons who use service animals are typically protected on both the state and federal level.

Unfortunately, not all businesses are aware of or properly trained on the law. This can and has led to my being denied access to a public place. Most recently while in Georgia visiting family Maggie and I were denied access to a local restaurant. The manager on duty asked for Maggie’s papers.

By law, no papers or certification are required for service animals. Businesses can ask two simple questions. Is that a service animal? What service does it provide? For most public places these are the only two questions that can be asked

There is no requirement for a doctors note or prescription. No requirement for papers or certification. Service animals do not even have to wear a vest identifying them as such.

I believe that education and information are the best solutions. When denied access to the local restaurant I simply informed the manager on duty that no papers were required by law. Unfortunately, the manager had Been misinformed by whoever trained him. He would not accept my explanation.

Rather than cause a scene, I left him a small card I carried with an explanation of the ADA legislation and left the restaurant. Past experience has taught me that arguing will not accomplish anything.

The next day I called the corporate office of the restaurant. A return call from the General Manager solved the problem. He acknowledged that the local manager had acted incorrectly, apologized and assured me that the manager was now aware of the law.

That worked for me. I believe our job as advocates is not to comfort or argue, except as a last resort. Rather we need to educate and inform.

I did return to the restaurant the next week for dinner. First, to make sure the problem was really resolved. Secondly because I wanted to try their food. There were no problems and the food was good.

We need to keep speaking our wheels. We also have to educate and inform.