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.

 

Posted by RespectABILITY Law Center on Thursday, November 20, 2014

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.

Crabbing From a Wheelchair

I know eating crab is the best part but have you ever tried crabbing from a wheelchair.  Have you ever wondered how someone in a wheelchair goes crabbing?

I went deep sea fishing and crabbing about three years ago up in Maryland. I will tell you about the deep sea fishing before I tell about crabbing.

real fish pic (Small) Picture 115

 

 

 

 

 

 

 

When we got to the fishing charter boat, we saw that we had to climb down a latter into the boat which would have been a challenge for me.  Instead, two or three guys just lifted me up in my wheelchair and set me in the boat. I caught the biggest fish on the boat that day.

Crabbing time, we went down to a peer to go crabbing. I used a string, crab basket and some chicken necks to catch the crabs.

There were two ways I did the crabbing, one while sitting in chair and the other by propping myself up against the railing. Some people have to stay in the wheelchair because their legs are not strong enough. (You should work out your legs so they get stronger)

While sitting n the chair I tied the string to the crab basket and tied the chicken neck inside the basket. I then took and threw the basket in the water while holding on to the string. I let the basket sink to the bottom.

I let it sit a few minutes and then pulled up on the string until the basket was above the water. I pulled all the way up if there were crabs in the basket but if not I lowered back down.

Now doing the crabbing while standing up against the railing is pretty much the same except I was standing up.

Hopefully this gets you wanting to give deep sea fishing and crabbing a try. I thought it was a blast!

Get out there and do new things.  Remember squeaking your wheels will get you far!

Science Fiction, Fantasy, Comics, Gaming and Those with Disabilities

Dragon Con in Atlanta bills itself as the largest multi-media popular culture convention focusing on science fiction and fantasy, gaming, comics, literature, art, music and film in the universe.

It is held in a number of hotels in downtown Atlanta and the crowds can be massive.  Over 50,000 people attended this year, possibly 60,000.  They can be intimidating for people who have no special needs or disabilities, but for those with disabilities it can be a massive task to overcome.

Two things make Dragon Con easier for those with disabilities to handle.  First, the people who attend the Con are mostly geeks.  Yes we are geeks and proud of it.  Many of them have been picked on or made to feel different.  As a result, the Con crowd accepts everyone and judges no one.  No matter what, you are made to feel welcome.

Second, the Dragon Con disability services are great.  The staff and volunteers do their best to accommodate everyone.  It does not matter what your special need or disability is, there is an attempt to meet your needs.  As with any event this size, there will be problems.  As with any event this size, there are never enough sign language interpreters to go around.  As with any event this size, wheelchairs and walkers often get lost in the crowds and have difficulty getting through.  Elevators can also be challenging because of the number of people.

Despite the crowds and the size of the event, everyone I talked to had a great time and had little or no difficulties with getting the accessibility they needed.

I attended with my service dog Maggie and a friend also joined me with her service dog.  We were given seats up front in most cases to protect the dogs from being stepped on or tripped over.  It also allowed us to enter before the mass of bodies pushed through the doors.

Most of the attendees were respectful to the dogs and although many asked if they could pet them, only a few reached out without permission.

Overall the Con was a favorable experience – we had fun and Maggie handled the very large crowds very well.  I am not sure if a crowd of 50,000 to 60,000 non-geeks would have been as much fun or as easy to handle.

My experience has been that geeks (and I am one, albeit and older geek) tend to be accepting and easy to get along with.

Meanwhile, keep squeaking those wheels and have fun.

Trust Me That it is Not About I

I was at church Sunday and heard a great message/sermon that got me thinking. The title of the message/sermon was, “Don’t Trust the I!”

The congregation thought that the pastor meant Eyeballs but then he explained that he meant, “I.” The pastor went on to say how we say that I did this and I did that but it’s a lie because I did nothing, God did it/allowed it to be so.

This blog post is not going to talk about that though.

People in today’s society talk a lot about I and few about we (I need to win the lottery, I need a new car, I got this far, I got a raise, etc.)

Let’s start getting on social media and talk less about I and more about we, us, society, etc. You should also do this when you are talking with others and are in public. I just realized how media starts with me, shouldn’t it be about us? Don’t trust the I!

I was thinking as the pastor was talking, about how the president, congressman, etc. says, “I helped the country, I saved the economy, I made this country free, etc.”

The truth is that I did nothing, WE did something, the people did, and everyone in the legislative positions did! What makes this world spin and success, is everyone working together to make things better.

Let us start reaching out to each other to help, give assistance, etc. You may say that you know no way to help. Yes you do so do something and show that your heart is more than an organism in the body!

We can start working together and make this world worth waking up in the morning. I should not be your focus, we should.

So let us squeak our wheels and make this happen!