Archive for Living With A Disability

Who is the Biggest Barrier?

Who is the biggest barrier when it comes to getting the best life for you child, family member or client with a disability? Would you say it is you or someone else? The fact is that you are the biggest barrier.

As a parent, guardian, family or caregiver, what is your role?

Your role basically is to be there for advice, support and fight for what your child, client or family member needs to get them towards a better future.

What are you doing right and wrong?

Right – Most of you in this room are fighting to get the best thing for your child, client or family member. You are there for advice and support. You will fight your butt off to try and make sure nothing really bad happens to them.

Wrong – We care so much about our child, client or family member that we hold on with such a tight grip because we don’t want them getting hurt or worse. We may think that we know what is best for someone without eve n discussing it with them, that it is the way it is. We don’t discuss with them what they want and what they think is best when it comes to their life. One ex ample is that you may think college is the best for them but they may want something else or think that college is not the best for them. The way it usually turns out is that it goes your way, you don’t even tale the time to discuss with them because you think that you know all the answers. The fact is that you are wrong.

We blame things on the school government and community when things go wrong but in most cases, you are the problem because you are holding on with such a tight grip.

How can you change to start getting your child, client or family member on a path towards success?

Start by loosening the grip. You may be so s cared that they will get hurt but you need to let them get out there and experience things, have failures and learn the kind of life they want. We /learn by getting out there, failing and going through things! Be there for support and advice but don’t try to run their life.

Let me give you some examples: I have been through many things as you heard in the beginning. I have failed many times and still fail at things but it has got me where I am today. My parents and family has been here to give me advice and support me in adventures I want to take in life. My parents did not put limits or boundaries on me. They supported me when I decided to go to college, move out on my own, start my own business, etc. They are also there for advice when I need them.

Be there but no matter how hard it gets, don’t give up! Squeak those wheels and let’s do this!


From the Trenches to the Big Stage

This world has many amazing motivational speakers, like Tony Robbins, Les Brown, Steven Hawkins and hitting the big stage is the next amazing speaker Thomas Moon.

Thomas is a self-advocate and author/motivational speaker (Check out the book and motivational cd at Thomas Moon is available to speak at your next conference, event, business event, nonprofit, church, etc.

A little about Thomas

“I am an upbeat guy and a very likable person.

I am a product of the foster care system.  I was adopted at the age of 11. Before that, I grew up in foster care in Pennsylvania and Florida. I have cerebral palsy, which weakens muscle coordination. I use a wheelchair most of the time, but can walk with supports.

Growing up in foster care is difficult.  Being disabled, being different and growing up in foster care is very difficult.

However, I am a survivor.” Thomas Moon

View Thomas’s marketing poster below (Available posters to hang in your business, community, etc.)

A list of Thomas Moon’s awards and accomplishments


  • Voted Best Leader Under 55 By Ocala Magazine
  • Graduate of Partners in Policy Making 2010
  • 2011 recipient of the Idelio Valdes Leadership and Advocacy Award
  • President Ocala Business Leaders 2012
  • 2013 Appointed to the Florida Development Disability Council by Governor Scott
  • Founding Member of the Marion County Disability Alliance
  • Business Owner/Entrepreneur

And more

Again Thomas Moon is available to speak at your next conference, event, business event, nonprofit, church, etc. Please contact, or by phone at 352-502-5994, if you have any questions or to schedule Thomas to speak.

Remember to check out the marketing poster below and to not be afraid to squeak your wheels to get things done.



Another Year In Tallahassee

I recently made one of my yearly trips to our Capital in Tallahassee.  Some years I have make more than one trip, but most of the time it is just one trip to advocate for legislation helping those with disabilities.

Chatting with Senator Dean (he will soon be terming our and he will be missed) I was reminded that I have been meeting with him since his first year in office – that was 2002.  Time flies, so my trips have been going on for over 12 years.  I am not sure if I was visiting before he took office.  Encounters blur together and memories are not always perfect.

Never the less, it has been a lot of years advocating.  Over the years my advocacy has been varied, not just limited to those issues that affect the disabled.  In fact my first couple of years centered on children’s issues and my trips were made during Children’s Week at the Capital.

Although these last years I have been going up during Developmental Disability Day at the Capital I still advocate for more than just those with disabilities.  I continue to advocate for our children, especially those in foster care or recently adopted.  This year there were some justice issues that also were on my legislative agenda.  Two of them being a bill to end the death penalty in Florida (it may not pass this year but it is inevitable) and a bill to required a unanimous jury verdict to impost the death penalty (this looks like it could pass this year.)

Restoring budget cuts for those with disabilities is a big issue this year and will continue to be for the future.  Reimbursement rates for those who provide services to those with disabilities have been cut over 14% on the average.  And these cuts have been in place for over a decade.   This year advocacy groups are hoping to get 7% restored.  This will still not bring us back to 2003 levels.

Employment and transportation are also important issues.  There is an Employment First Bill that could give employers incentives to hire persons with disabilities.  Transportation funding always falls short of what is needed.

There are still over 20,000 Florida citizens with disabilities on a waiting list for services.  The legislature and governor are being asked to provide funding to remove as many as possible from this waiting list and to provide these essential services for our vulnerable citizens.

Children with disabilities are still being housed in nursing homes or facilities for adults.  Children with some medical needs, usually complex, are being housed in nursing home facilities for the elderly despite a lawsuit and direction from the Federal Government to place them in appropriate facilities.

There are many other issues that impact the daily life and quality of life of our citizens with disabilities.  These needs should be addressed and solutions put in place.

I am a realist when it comes to Tallahassee.  I look for, hope for and work for incremental changes.  This has worked in the past, as we have moved forward to better serve this population.  I am heartened by the fact that we have not taken any steps backward in the last few years.  This is an area where two steps forward and one step backward is unacceptable.



Are you in a True Competition by Getting an Award by Participating?

Everyone will get a trophy.

When you think of Special Olympics and even competitions in schools, you think that it is a great thing and will be something the participants will grow from. That is false because how we give out trophies and treat each competitor.

Today, Special Olympics and other competitions give each competitor a trophy or ribbon and treat them like they all won. There are different reasons that this does not work and is bad for each of the participant’s future.

  1. Reason for a competition

A rivalry between two or more persons or groups for an object desired in common, usually resulting in a victor and a loser but not necessarily involving the destruction of the latter.  The act of competing is to strive to outdo another for acknowledgment, a prize, supremacy, profit, etc.

  1. Why giving a participant a trophy no matter what, is not a good thing

When you give all participants a trophy no matter what, it takes away the point of a competition. Giving every participant a reward no matter how they do, tells the participants that they don’t need to try or work hard at something because they will be rewarded no matter how they do. This is not true because in order to achieve success or get somewhere, you have to do something. Also rewarding everyone no matter what gives the participant no reason to compete and they lose the skills on how to compete.

  1. What do we need to do to fix this

We should start making every competition like a real competition and only give trophies to the first, second and third winners. I understand why a reward might be given to every participant but it’s not about everyone feeling like they won. Failing at things is how we grow and become better human beings. Bill Gates, the president, Joe Smo down the street did not get where they are by getting everything handed to them. They had to work their butts off and still do!

To sum this up, let me tell you my story of when I went to Special Olympics. When I was younger I went to compete in Special Olympics once and it was fun but that’s all. After, I told my parents that I didn’t want to be a part of Special Olympics anymore because everyone got a trophy and I wanted more of a competition. Special Olympics is a wonderful thing, don’t get me wrong but it was not for me.

Let’s keep fighting and squeaking our wheels because competition is good and will take us far!

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!

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.

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

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!