Introduction

This book should show you that it’s not about you. I became disabled at age 42. I looked awake but I was in a coma for 5 long years. I didn’t recall what happened to me but when I came out of my coma I had lost a lot of my memory of certain things but I knew that God had cared for me and my memories of God were intact.

And I know that God has taken care of me for years.

I have wondered why He would do that so instinctively I checked His word and I found the same thing over & over again: He loved me.

And although I found that hard to imagine I just looked at what had happened very closely.

All of the medical personnel had said: “He’ll die or at best be a vegetable” but I’m not dead and I’m not a vegetable. In fact I live in an apartment and take care of myself. There ARE some things that I can’t do (I can’t walk) so I have a roommate, but I make my own decisions, pay my own bills, open my own mail, keep and monitor my own budget & keep my own bank accounts. So it’s pretty obvious that God loves me.

So after living as a fully normal person for my whole life I was now disabled.

This book is my story from my perspective.

The term “disabled” at best is stupid because we are able to do things and ‘dis’ means not and we are able, we just do things somewhat differently but we are “able” and there is no ‘dis’.

As human people we all have different abilities which makes total sense because we all were created individually. So the definition that we have initially comes from society and it is based on how we are viewed by society only. This book is from my perspective totally independent of society or anything else it’s just a real story which will show you a real different picture which may be different for other people. But the definition by society only compares one perspective-people without disabilities and this world is made up of many different kinds of people. So to decide that because we don’t meet 1 perspective therefore we’re OUT of the game of life is ridiculous.

My intent is to get you to redefine disability so that you’re clearly viewing people for who they are and more people are included in the game of life.

I have had a great deal of psychological testing because I had been a genius before so I wanted to find out if anything had changed as a result of my attack. The testing showed that the entire right side of my brain had been severely damaged. I don’t know what that means but I still seem to be intelligent.

I’m sure however that there are times when I simply do not understand things and the hardest thing for me is determining whether something is of this World or something that I just don’t understand because either way people don’t like it.

Getting people to like things is a huge problem. If you’re not disabled people just say that they have a different opinion but if you are disabled people say that “oh well, they’re disabled and they can’t be trusted”.



Table of Contents
Chapter Name Page
1 The issue 1
2 My story 28
3 The Bible’s view on
disabilities 43
4 Risks 47
5 Roadblocks 49
6 What it is like to have a
disability 53
7 Am I going to play in the
game of life? 64
8 How I can help you and
you can help me 66
9 My sons have disabilities 70
10 I had the guy who wrote this
book volunteer for me! 74







Chapter 1
The issue
=======================
1 Sam 16:7
The LORD does not look at the things man looks at. Man looks at the outward appearance, but the LORD looks at the heart."
NIV
========================
As humans we seem to have decided that we’re the Pros that have the answers for everything. Forgetting that God makes everything or deciding that people make just what they want there are now many prenatal tests and research done on those tests that say things like: “This is happening…” or “Your baby will…”. So people often abort their babies based on what those tests say and completely disregard what God may have chosen to do.
1
This book is devoted to those who have not been aborted but have been born with disabilities and those who were not born with disabilities but now have disabilities due to some unplanned event.

The reality is that God has a purpose for everyone He makes. And the scriptures say that all the days of a person’s life are written in His book BEFORE THEY ARE BORN.

It sounds simple but it’s true.

And we seem to have forgotten how our Savior came to us. The Holy Spirit impregnated an unmarried virgin woman and He was born in a manger. People weren’t happy with that though.




2
I’m sure that there were may other babies born that day in much nicer places than a manger and to parents who were much higher on the social ladder but God was born to Joseph and Mary in a manger. God used the things that weren’t to save those that were. That was pretty massive and we should have caught on. But people didn’t accept Him then either.

Even when a disabled person can amaze us credit is quickly given to someone or something else but never to God.

And Society has many standards and rules that are called “normal” that these people cannot meet or abide by.





3
So what has been done is create something new that is required and these people are no longer acceptable as per our standards. Imagine that! God created them but they’re not acceptable? The Creator created something but we won’t accept it?

As a parent of two disabled sons and I’m now disabled too I can tell you that this is way more involved than I ever thought.

I thought “They have problems but I can just teach them how to get around them”. Not so. They want to be like everyone else but the disability never changes. They may learn how to get around some things but they’ll always be disabled so as a Christian my job is to love them like Jesus does.



4
Disabled people are just people. There is no change in them. They aren’t reborn under a new type of person such as color, race or sex and people do not become animals but society does name them “disabled” and sets them apart but inside they know that they are just people. And life is hard.

===============================
As a parent of two disabled sons and I’m now disabled too I can tell you that this is way more involved than I ever thought.
===============================

So this issue has nothing to do with their disability but it has everything to do with societal acceptance.

So the issue is societal acceptance.



5
And society has a way of recognizing and celebrating those who help disabled people.
Does society do the same for people that help “normal people”? Aren’t they the same?

Have there been societal awards for those who make extra coffee?

Think about this: at a time when we did not deserve it the Father had His Son take our place and gave us His Son’s righteousness. However when disabled people are simply themselves other people get disgusted and neglect them. I see no balance.

First of all I can say that there are many kinds of disabilities and some are acceptable and some are not. For example glasses and hearing aids are acceptable but mental and physical disabilities are not. According to society.
6
But in reality ALL disabled people are just normal people who are trying very hard to be accepted by others and some are but most aren’t. There are many rules and standards which for most are nearly impossible to remember and keep straight but even harder for disabled people!

Can you imagine if you weren’t accepted by people or out of the game of life? God chose us all but as people we reject many.











7
1 Cor 1:26-29

26 Brothers, think of what you were when you were called. Not many of you were wise by human standards; not many were influential; not many were of noble birth. 27 But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong. 28 He chose the lowly things of this world and the despised things — and the things that are not — to nullify the things that are, 29 so that no one may boast before him.
NIV

God seems to not only have understood disabilities just fine but He even gave them a purpose too.


8
We are all God’s workmanship so can you imagine neglecting one of us because we aren’t the way that you want us to be?

People can’t be something that God did not design them to be. If God did not design you to be a Medical Doctor and you go to college to become one you’ll flunk college.

Disabled people are the way God designed them to be. But I can’t do all I want because my audience is very limited and I’m out of the game of life.
===============================
Can you imagine if you weren’t accepted by people? God chose us all but as people we reject many.
===============================
Out of my 3 sons 2 have mental disabilities and having been like everyone else for 42 years but now having physical disabilities and I’ve been treated so rudely that I had no choice but to write this book!
9
I don’t imagine that the hard time I’m having has been any different from what my own sons have experienced except that I know better.

My hope is to teach you some things in the event that you end up with one too (and it could easily happen!). So read on. I’m an intelligent and accomplished man so this isn’t boring but I’m sure that it’ll be news to you!

Just to tell you right away, for me the game of life is working, being paid, learning and building a retirement. Being responsible.

I would like for people with disabilities to be treated as if they are normal because they are normal instead of being treated like Nazi bait or scum. And this is America?

10
One of the things I see the most often is that people are good about saying things but the result of what they do is far less glamorous especially for disabled people.

These people (disabled ones) live their lives always trying to be accepted. Whereas all they need is for people to say “ok, you’re different. So what? How can I help you?” But that doesn’t happen very often if at all.

Years ago black people, although they were regular people, were treated like scum but that has changed and now disabled people are treated like scum that most people want nothing to do with.

And people have a very bad habit of having contact with someone with disabilities only IF someone who is normal and educated about disabilities is there at the same time.
11
Let me tell you as a disabled person that is extremely hard to deal with. That tells me that they think that I may cause a problem so they want help or back-up from someone that they feel is more capable.

And some people feel the need to properly and thoroughly describe a disability to others.

And I want those things to change!

My Sunday school teacher took us to K-Mart where an organization gave each person a certain amount of money to shop with and for each group of people shopping there were helpers to go with them. K-Mart took several pictures of all of us and afterward gave us pizza, drinks, cupcakes and popcorn. What a great day!

12
But while this was all going on I was watching and noticing some things. The store was filled with people. We had disabilities but most did not and those who did not were quite different from those who did.

At first I wondered why and then it hit me like a ton of bricks! When people grow up they quickly learn that there is a societal standard for everything that they have to meet in life. That standard is Good-Better-Best. If you’re good then: “ok, you should be” but if you’re better then: “super! You’re better then average” But if you’re best then: “Outstanding! YOU are the best that there is!”
===============================
They will repeatedly try to fit into the game but because they are disabled, for them there is no game!
===============================
13
Now it doesn’t take a brain surgeon to figure out that people with disabilities do not and cannot meet that standard so because they cannot meet it in the same way that people without disabilities can they are viewed by people without disabilities as “less” or “handicapped” and people with disabilities are out of the game of life entirely.

Everyone tries to be better and some even try to be best. School, college, jobs, pay, etc. are all based on that and disabled people are considered to be out of the game entirely so there is literally nowhere for them to go! They will repeatedly try to fit into the game of life but because they are disabled, for them there is no game!

So they go into life never fitting in but they try hard with no success. People should see the tragedy that this is!
14
I was not supposed to be here but now that I am this tragedy has to stop! All of the abilities for disabled people are going down the drain because they are not included in the game of life.

Because we are all God’s creations it is NOT POSSIBLE that any one of us could be dispensable (1 Cor. 12:22). That means non-disabled and disabled. There is no difference in His eyes. He sees the heart not the abilities or the manner in which things are done. His strength is made perfect in our weakness.

However Society teaches us that independence equals strength and disabled people need help thus people see them as weak. But people were created to need each other therefore disabled people may not be following Society but they are doing what they were created to do.
15
Jesus himself never came against non disabled people, disabled people, prostitutes, thieves, drunkards or tax collectors but He did come against the Pharisees.

The Pharisees were the religious non disabled know-it-alls of that time and what they said went! Hmm, that sounds very much like the non disabled people of today.

During this time the average illiterate Jew could not possibly keep up with them. Wow! That really sounds like disabled people not being able to do things the non disabled way!

The non disabled ways are in no way helpful for disabled people. They are controlling, manipulative and repressive and people who push non disabled ways on disabled people should be arrested!
16
Modern day non disabled people fight over many things such as religion, hairstyles, clothing, children and careers. But disabled people are not and should not be a part of that. If you are simply human you should be free to do whatever you can and people should be happy. Of course they won’t be happy but they should be.

===============================
All of the abilities for disabled people are going down the drain because they aren’t included in the game of life.

So to be upfront, clear and honest the issue is that Society does not accept disabled people so it’s time for some changes!





17
All of the people that we as disabled people meet encourage & demand that we do their things their way. So we are no longer human beings we have to become human doings and for many disabled people this is not possible. I should know because I was literally thrown out of therapy and told NOT TO COME BACK because I couldn’t do what they wanted!

Therapy has reunions and you can go IF you can prove that you’re normal because of what THEY taught you in therapy.

So the real issue is about societal acceptance of disabled people.

But people’s opinions don’t really matter:
Prov 29:25
25 The fear of human opinion disables;
trusting in GOD protects you from that.
The Message
18
So it’s pretty clear. The Creator created us but others won’t accept us. Now THAT’S a real live disability!

Jesus said the He came for the sick but our society isn’t Jesus.

Unlike people, God isn’t looking for perfectionists. He is looking for people who know that they need help and turn to Jesus.

All people (disabled AND non disabled) need to remember that we are losers without Christ, but with Christ we are winners regardless of any abilities. If people could only believe this then maybe disabled people could play in the game of life…

Who defines people as disabled? We don’t but others do.

19
If people think that someone does better than others people say that person is gifted but if they don’t do better than others or do it in a certain way the people say that they are disabled. So if people think that you do things their way and well then they call you “gifted” if not they call you “disabled”.

So that’s why I am out of the game of life. Regardless of my brains, experiences, education, desires or abilities, I’m considered disabled. And I’m out. And I don’t like that.

I went all of the way though all of that education, experience, time & money for this? No.




20
Recently I volunteered for my Church putting years and years of sermons on the Internet. At first my boss came over to my home and brought some files on diskette and trained me then left and I finished the work. But then we communicated only through email and I did fine!

So I can participate in the game of life. And I have.

I wouldn’t have accepted money for helping God, but I would like to be paid for doing something worthwhile.

==============================ve
I went all of the way though all of that education, experience, time & money for this? No.
==============================


21
I’m not the usual “get dressed and go to work” person but I am eager and I work from 7 AM till 11 PM 7 days a week. Now that’s much more than paid employees do!

In all forms of life people try very hard to define, learn & know about what God has done. They have put degree titles after their names to prove it and they get paid big bucks because people appreciate the knowledge but disabled people, though they know the same or more will not have high paying titles or degrees after their names but God made them too for His plan not their plan.






22
Because they’re out of the game of life entirely that’s a role in life that disabled people will never play. Is that fair? Is that what America has to offer people? I don’t think so.

I’m a relatively young man and I do not want to spend the next 20-40 years playing Solitaire on my computer and I don’t think that my sons want to spend their whole
lives doing nothing, so this has got to change!

Each and every person that applies to enter a PhD program should have to agree to the following:

This program is only available to normal people. You are very different and you will gain a new higher role within Society. It’s a lot of work but you can do it. You will be valued and paid well. Good luck!
23
To explain the pre statement for a PhD program:

To my knowledge there is currently NO PROGRAM for a PhD for disabled people. Most likely can’t afford to go to that much school. They may be smart enough (God made them too) but they can’t afford it.

It is a lot of work but there are benefits for doing it – societal benefits. Higher pay, better opportunities, better roles and more respect, but disabled people can’t have all that. They aren’t recognized or given a higher role or have access to better opportunities. They’re just disabled so other people GET that benefit.

That doesn’t sound good does it?


24
So IF you’re disabled you have nowhere to go in life. There is no quest for education, job role, appreciation, value, respect or pay, just Social Security. You just stop where you start.

The big problem for someone like me is that I started long ago and didn’t stop then so there is nowhere for me to stop now. So now I look around and see things that others haven’t seen and I don’t like it.

1 am disabled but I care for myself, pay my own bills and do virtually everything else just fine but I hate hearing someone on the telephone say: “Who’s taking care of you because I can’t understand you.” I want to say: it works fine for everyone else so obviously YOU have a problem! But getting someone to admit that doesn’t get me what I need but people can be very hard to deal with and I think they’re proud of it.
25
This is not normal life. What people have done is they classify someone as disabled, set them apart from everyone else, pull them out of the game of life, charge a lot of money to help them, build careers and retirements based on them, live their lives separate from them and we’re supposed to feel good? Not on your life. This is horrible! And it’s past time that someone said something about it!

This is not just a case of me not understanding things-I understand more than you know but you’ll experience it IF YOU BECOME DISABLED! AND YOU WON’T LIKE IT ONE BIT so the time for change is now!




26
I live in a wheelchair and I have a Traumatic Brain Injury (TBI) so yes I don’t mind being called disabled because I can’t walk but I do mind being totally pulled out of the game of life! So the redefinition of disability applies the same kinds of evaluations that are used for everything else!

Talk to a person and ask them questions! Test them! Let them show you things! And based on what you learn you can make your decision. But just to pull anyone out of the game of life is just plain stupid!

People may have not complained before but God has brought me this far for a reason! You’re hearing me complain now! How would you feel in this happened to you?

If it doesn’t change it will!


27
Chapter 2
My Story

I was born in 1958 and my game of life began. I lived a seemingly normal life. I was born into a family where there were big problems. Problems no one ever said anything about or corrected, but there were problems nonetheless (the game seemed too normal). At birth I was not disabled. I went to school, I worked and I played water polo on the school team in high school. I even took 3 years of French in middle school.

But even though I appeared normal to others those problems were still there and they would result in me being disabled now.





28
As a junior in high school at 16 I married my first wife because she was pregnant with my natural son (no one saw this as a problem). Many things happened that are not worth speaking about but we had problems. I moved out and began divorce proceedings when I was 18 years old.

Then to try and make something normal of myself (see? even “normal” people try) I began dancing and very quickly began teaching Disco dance lessons and became a teacher and performer.

Then although unplanned for I met my second wife and I was her second husband and the problems were unnoticed but still there and would eventually cripple me.




29
When I married my second wife we lived in a rented home somewhere where I had never lived before. My 2nd wife’s parents lived in a city where I had never been before. Hmm, I see a pattern beginning… Also my wife had a son with a disability.

I did eventually buy my parents home before they moved out of state (…hmm another pattern?). Then we moved into a condo in a city where I’d never lived (at least I was consistent). While we were in the condo we adopted a baby at birth. Then we bought a house in a city where I’d never lived. And then we learned that the son we had adopted had a disability too.

I went to work for a software vendor in a city where I had never been then my traveling began.

30
I flew to Philadelphia, PA (which I really liked), to Florida to Walt Disney World, to New York City and then to Louisville, KY. And at some point during that time I found Jesus and committed myself fully to Him.

===============================
Hmm, I see a pattern beginning…
===============================

And interestingly enough when I was in Kentucky the client wouldn’t see me but I heard God telling me to move there. So I came home, sold my home, bought a home in Kentucky, quit my job & moved my family to Kentucky. Again I had never lived there before.

The house in Kentucky was a dream! Two stories and 5 acres of land! I went to work for GE Consulting Services and was assigned to GE Appliance Park.
31
I led Bible studies at work, we had prayer meetings at work, we became active in a Church, we had Bible studies in our home and monthly potlucks for Church friends. I volunteered as a counselor at a Group Home, volunteered locally as a videographer, volunteered as a youth pastor and became a home for an unwed mother. But the problems were still there. Unknown but still there.

Remember the pattern? I got a job for ARC and they settled sales for the World’s Airlines. The home office was in Virginia, but they had offices in Louisville, KY and Tampa, FL. I started in Kentucky but before long I applied for a job in Virginia and I got it! Tons of money and I started their first computing department. I named it Production Support. I had 7 employees and I moved my family to Virginia (another place I had never lived in).
32
I do not hardly remember anything about Virginia. But one day after many wonderful world travels (which I have pictures and memories of) I woke up after a 5 year coma in a hospital and I could not walk and my wife was extremely angry.

The problems had come to the surface for me and I was handicapped for life. So now my sons and I were all disabled! Now I was going to begin living what my sons have been living. But I didn’t realize it for a long time.

That is what this book is about because now I’m learning firsthand how hard that life has been for my sons!





33
First I cannot walk at all. I have been to therapy but no go. I cannot even use a walker. I got out of my wheelchair once and walked to someone and stood by them for a picture (I have that picture) but I could never do that again. I have Ataxia mostly on my left side (and I’m left handed). I have Dysphasia which means I must use thickener every time I drink, so good stuff like ice cream, soup & salad are things I can’t have. Speech is another thing that is not good so as an alternative to that I write. I know what I’m thinking and I think that I am saying it but people complain.

===============================
That is what this book is about because now I’m learning firsthand how hard that life has been for my sons!
===============================

34
I have floor to ceiling poles. So I can go to bed & get up, change my clothes, go to the bathroom and get on the shower chair. I do not ever get hungry or full, so I eat by the time on my clock.

I do not recall my education at all but I do use my computer a lot. I send scriptural emails every day and I send my thoughts to a group of people, I have a blog at: http://tobyhoff.blogspot.com/
a website at: http://www.tobyhoff.com
I volunteer a lot, I have written a number of books, I speak publically but the thing that angers me the most is when someone says: Isn’t there somebody else that I could talk to? I want to say: Give Me A Break! I’m trying as hard as I can! Can’t you try a little harder?

And I can see how hard it is for others…
35
I just got here in 2000 but imagine if I was born with a disability.

I just want to point out that I have been cared for by God but I’m nothing special and I’m not doing something special I just have faith and I’m thankful.

Since the year 2000 I have met many people but there is only 1 group of people that I am very happy to see each and every time and those are the people in my Sunday school class. It is a group of disabled adults.

There are probably 50 or more of us that happily come each week. We worship together and it is the best class I’ve ever been to! And even though I have a T.B.I. I really care for these people.


36
Would any of us fit into the other classes? I don’t know but it’s so safe to be ourselves there why would we change? We really care about each other. We accept each other for who we are. There is no putting on and there are no games.

And occasionally I even get to share things with that group. I may think of something and write it up for emailing to others and then think about them so I write it up from their perspective, print it out, fold it up and put it in my waist pack so it’s with me at Church. Then when I can I share it with my class!

I do have an issue with Physical Therapy though. I have been to Physical Therapy in many locations and in many cities but there is one thing that is the same among all of them.

37

I can’t walk the way that they want for me to. I can walk just not their way. So all that they all do is try to teach you to walk their way and if you can then they will keep you but if not-it’s your fault and they kick you out!

That doesn’t feel good.

If they would have just taught me how not to get hurt then I would be walking now! If they would approach things from where you are now and what would you like to do? That would be much more beneficial for everyone but instead they have 1 standard way and that’s all.




38
I’m not saying that some things are not good because they are! But not everyone can do things their way so a lot of people think that they have failed and end up in wheelchairs like me. And that’s Therapy? It sounds rather Stepfordish to me (we decide how everyone will act....).

I have a problem with Speech Therapy also. They make you do things one way! Disabilities all occur in multiple ways so one way can’t possibly work!
===============================
So time after time I returned to Therapy thinking: this IS Therapy and they WILL teach me a way…but it never happened and they got paid!
===============================
I have been taken for special tests and told to do something that I knew was wrong but I did what I was told and I failed the test! And the Therapy crew was upset with me!
39
So I have been to a number of Therapies in a number of locations but only 1 Therapy that used Vital Stim worked and I’m still eating by mouth and so I can taste things.

But each and every other Therapy failed! And they charged good money for those failures. And built retirements on them. But for what? There are no standard definitions for disabilities so no standard ways can possibly help people.

We have very obviously changed the intent of Therapy from a way to our way and many innocent people have built someone else’s salary, retirement & benefits.

So time after time I returned to Therapy thinking: this IS Therapy and they WILL teach me a way…but it never happened and they got paid!

40
One of the most critical things for me is that NO ONE EVER TALKED TO ME ABOUT WHAT HAD HAPPENED TO ME, WHERE I WAS OR WHAT TO EXPECT. So I just went from day to day, prayed and came to my OWN conclusions.

God has been extremely good to me but it would have been nice if another human being had explained things to me. Probably my VERY BEST TIME has been since I’ve been on my own because I’ve spent a great deal of time in thought and prayer and learned how to figure things out. I’m no longer waiting to be told things because God has filled that role for me.

this IS Therapy and they WILL teach me a way…but it never happened and they got paid!



41
One of the reasons that I prefer to be on my own is that I grew up always being on my own. I involved my parents in nothing. To me they were only there to be obeyed, nothing more. Now I see that as a problem. My perspective has a whole different set of inputs.

I just saw a commercial for the ASPCA that says: “These animals only know what it’s like to be abused and neglected…” and these are animals and that’s exactly what disabled people experience and we are people! We are only abused and neglected too. If you were not aware of that before I’m telling you now. It’s true!






42
Chapter 3
The Bible’s view on disabilities

Jesus spent a great deal of His time healing and being around people with disabilities and there are stories in the Old Testament about people with disabilities and this next verse sets things very straight:
1 Cor 1:25
25 For the foolishness of God is wiser than man's wisdom, and the weakness of God is stronger than man's strength.
NIV

But people tend to think that they’re so smart:





43
1 Cor 12:22-24
22 On the contrary, those parts of the body that seem to be weaker are indispensable, 23 and the parts that we think are less honorable we treat with special honor. And the parts that are unpresentable are treated with special modesty, 24 while our presentable parts need no special treatment. But God has combined the members of the body and has given greater honor to the parts that lacked it.
NIV

As human people we think that we know everything that there is to know but God has shown us that we don’t because He does! Disabled people are there because God planned for them to be there! Psalm 139:13-16 says:


44
13 Oh yes, you shaped me first inside, then out; you formed me in my mother's womb. 14 I thank you, High God — you're breathtaking! Body and soul, I am marvelously made! I worship in adoration — what a creation! 15 You know me inside and out, you know every bone in my body; You know exactly how I was made, bit by bit, how I was sculpted from nothing into something. 16 Like an open book, you watched me grow from conception to birth; all the stages of my life were spread out before you, The days of my life all prepared before I'd even lived one day.

The days of my life were all prepared before I'd even lived one day. So He knew about, documented and planned for our disabilities, but on many fronts we are rejected by other people. Why? Because other people aren’t living for God. He says we’re indispensible but Society sees us as a hassle.
45
So the Bible views us as indispensable, planned for and with purpose but Society views us as a problem.

This is from the Bible and it’s about God’s choices in creating people:

1 Cor 1:27-30
27 But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong. 28 He chose the lowly things of this world and the despised things — and the things that are not — to nullify the things that are, 29 so that no one may boast before him.
NIV

Will Society be in charge at judgment? No, God will.


46
Chapter 4
Risks


First of all let’s define a risk.

A risk is something that a person tries but has no guarantee of being successful. They may be and they may not be successful and that is why they call it a risk.

My biggest risk is falling. I cannot just stand up. I am ALWAYS afraid that I’ll fall. And on 11-21-2010 I delivered bread from Church to neighbors. Seems simple doesn’t it? Well I did a good job delivering it but coming into my apartment I fell backwards and then out of my wheelchair and a neighbor that was a fireman had to help me get back in my wheelchair and into the house. Risk!

47

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A risk is something that a person tries but has no guarantee of being successful.
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One of my one sons with a disability too says that things like finding business, doing business, talking to people and making friends are all risks that he has to take.

He is also having a HUGE RISK just being himself at home. He just desperately needs to be accepted. He’ll never be anyone but himself and to keep a relationship and help him, I’m there for him.

To be honest, just living life is a HUGE risk for disabled people. Every action may or may not make non disabled people happy and that’s not living.

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Chapter 5
Roadblocks

A roadblock is something that gets in your way that prohibits you from advancing and causes you to do something that you didn’t plan on and for disabled people there are many roadblocks.

What gets in the way disabled people? Non disabled people!

Can you imagine demanding that someone do something that they cannot do and can’t be successful at? That is what we experience each and every moment of every day.

A very common and one of my least favorite roadblocks is when someone says: Isn’t there someone else I could talk to?
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Another one is being required to sign for things. I cannot sign anything! I have tried for 10 years to learn to write and I remember how fine, I just cannot do it.

Another one and the biggest one is realizing that I’m out of the game of life. I can do anything and want to but people won’t let me and I certainly can’t get paid for anything.

Being unable to walk means that people have to come and pick me up to go anywhere.

So I have to eat, drink, get dressed, go to the bathroom and call them before I can go then thank them when I get home. I have to always manage me so I’m not a problem to them.


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Isn’t there someone else I could talk to?
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One of my sons has to face the roadblock of being the way he was parented to be. He can’t change that and he had no control over that! So his personality is not his fault! But getting people to realize that is a roadblock for him and me.

The most critical roadblock I have is being asked to pay for things. Hello! I don’t work! So why do I keep being asked to pay for things or I go to collection? It makes no sense that this happens again and again and again. People have NO PROBLEM pulling me out of the game of life but then they want for me to pay for things!



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And people always ask me to fill out forms. Again, HELLO! I CAN’T WRITE I HAVEN’T BEEN ABLE TO FOR 10 YEARS! Why is this happening? Nothing about me has changed and a disability doesn’t go away! So why do I have to keep filling out forms to prove it?















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Chapter 6
What it is like to have a disability

I know nothing about any disability other than my own but there are some things that are the same so if you have a disability of any kind, read on.

It is extremely frustrating to try to fit into a world where we are not wanted, acknowledged or welcome.

To be born with a disability is far more difficult and this is why. They are born as people and they think that they are doing fine but after a while they begin to notice that people are treating them differently. Nothing has changed but people do treat them differently AND THEY NOTICE. It’s easier than you think to see that one group of people is treated one way and you are treated another.
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So begins the lifelong battle of trying to be accepted. Acceptance is key and they will never get it.

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To be born with a disability is more difficult.
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I know that my wife and I between ourselves never knew that our adopted son even had a disability. He was not only our son but he was a gift!

It was in preschool that problems came to the surface for the teachers and they talked to us. We took him to the Doctor and the truth was difficult to accept.

We did work with him but we didn’t know about the societal standards. So he is now 25 and trying to fit in.
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But unrealized by him he’s completely out of the game of life.

In my opinion from my personal experience first of all you don’t know that you have a disability. I honestly did not know for a very long time that I was disabled.

Why?

Because for my entire life I had been without one and I didn’t know what had happened or to what extent or that I had even been in a coma. So I tried many things just to try and show that I could do them because I thought that I could. But I couldn’t.

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I honestly did not know for a very long time that I was disabled.
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Even when Therapists said: “You’ll never walk” I thought “we’ll I’ll show you!” but I never could do it their way.

So yes I was angry with them and I thought of all kinds of reasons why they were wrong but after 10 years I’m still living in a wheelchair and it’s time to look reality in the eyes. So it has taken me 10 years to realize this! My “impression” of myself and reality had to come together.

And for so long people were so negative and I could not succumb to that negativity, there was no future in that at all. I was accomplished and had (I thought) made something of myself.

My dreams for my life were accomplished and now this? I felt like they just wanted me to give up and I didn’t want to.
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I was a young, intelligent & wealthy young man. Life wasn’t over by a long shot and I didn’t want to be taken out of the game of life.

It’s a 180 degree change and I had to make that change all by myself. But I’m glad I did.

There’s a lot to do but I have God in me so the game’s just starting and I won’t give up.

People without disabilities think that people with disabilities are LESS than they are because we have a disability.

No one has ever said to me: “Well you have a lot of experience (in some area) so why do you think that this happens?” or “How do you feel about that?” I am just used as it is appropriate but NEVER valued.
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We are people who require that others who think that they’re better than us to give something that they think they shouldn’t have to give.

And I’m sorry if this offends you but if someone gives anything at all I do not think that they should be rewarded! Rewards just fuel this poor idea of the game of life and God has given everyone everything!

But surprise! I’m not determined to make you feel good. I may at times but I need
encouragement too.

People with disabilities have to learn to face lots and lots of rude impatient people that expect something (that may be impossible) but they demand that it is done their way. There are some “standards” for things but who sets the standards?

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It took me 10 years to realize that I was disabled and no one ever talked to me or told me that I WAS handicapped. At 52 I figured it out on my own. How does a child do this and when and what negativity have they experienced?

One of my sons says that with a disability finding business, doing business, making friends and even talking to people is hard to do. Simple everyday stuff!

Another one of my sons thinks that he’ll just do everything that people without a disability do. To him disability is too bad of a name for him. Can you imagine how he feels when he cannot do something? Does the word failure mean anything to you?

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Lots and lots of rude impatient people
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They’ll never be like you but that doesn’t mean that they failed at all. They just can’t be just like you so they need acceptance and encouragement. Failure means you should be able to but can’t. And so it’s not often that “failure” is even possible! We can’t even do many things that you can so we cannot fail. But no one is here telling us that and we need to hear it.

People with disabilities don’t know that they’re out of the game of life. People just treat us badly. So it’s not easy.

There are now:
Normal people.
Normal people with disabilities.

Aside from the disability, both are normal people and that’s important to realize.


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People without disabilities have their own set of circumstances but people with disabilities do too! People without disabilities have to live in this world but people with disabilities do too!

Now what’s different is that people without disabilities participate in the game of life but people with disabilities don’t! (and that’s not their choice).

Why people without disabilities treat disabled people as if they’re something different is a mystery to me but it has to stop!

Does the term “unique” sound familiar? Disabled people should be considered to be unique but they are but they are named “disabled”.

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Unfortunately, very unfortunately (is anyone listening?) there are people in all fields (even medical) who think every disability is definable and they know all about it, but that’s just not true.

Each and every disability is unique. There may be a few similarities but just as every person is unique, every disability is unique.

So people who are like me are paying money to be told lies!

I am very thankful that God developed me to be the way I am because if not, I wouldn’t know what I know and I’d probably be dead!





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Unfortunately, very unfortunately there are people in all fields (even medical) who think every disability is definable and they know all about it, but that’s just not true.
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Why is this kind of abuse permitted and people are allowed to create futures and retirements? While disabled people are out of the game of life entirely. It’s wrong!

Most generally people with disabilities don’t even know what’s happening to them and no one ever tells them. So there have been many roles to the game of life that have been created and people are making money and building retirements based on disabilities. I wouldn’t even think of doing that!


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Chapter 7
Am I going to play in the game of life?

Obviously I will still be handicapped in the future but I will participate in the game of life.

I will keep writing books, sending emails, speaking and teaching, writing in my blog, volunteering and most of all I will keep working and living for God.

My number one goal though is to change the way people with disabilities are viewed by others. Because until that happens a great number of valuable people are being devalued and ignored and God’s simple instructions are being passed over for no reason.


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I will NOT become a preacher or a teacher. If I thought that God wanted me to then I would but people have a hard time understanding me so I’ll talk to a class IF there is someone there who can interpret. Otherwise I will go one to one because that works well.

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I will participate in the game of life
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Chapter 8
How I can help you and you can help me

This is a win-win.

Obviously I want to help you because this applies to you or someone you know but I need your help too. And I’ll never quit trying to help you. Any ideas can come to my email address: toby.hoff@gmail.com.

We have got to stand together because I can’t do this alone. I am now like my sons and we need help. Someday you may be handicapped or disabled too. It’s not planned but it may happen like it did to me.

So get involved! Encourage people to help people! Get the game of life to include all of us!

Change these societal perceptions!
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Don’t ignore handicapped or disabled people. They’re human beings like you are so treat them as such.

Involve them.

Befriend them.

Being handicapped or disabled is far from the end of life but right now it seems like it is so let’s change that!

Also, remember that few people help disabled people so there is not much competition, they’re more alone and lost than you were or are so get involved! And once you recognize them as people you might even have fun!

This is not just a “right now” thing this is an “eternal” thing.
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We are your neighbors and God said to “love your neighbors as yourself” and there’s plenty to do.

Offer to train a disabled person to do something for your company. Not everyone can do everything but you’d be surprised at what they can do, and to include them in the game of life is a big thing!

More people working means more taxes! And if they can fit in and earn some money for things that’s even better.

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We have got to stand together because I can’t do this alone
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We must demand that a persons disability is acknowledged, understood and accepted.
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Right now it seems that things must be done in a certain way only, but there are an untold number of disabilities so it makes sense to have many different ways to do things. You must help me make this happen.

Regardless of your job title, each person should be responsible for helping the company that they work for. Disabled people can have that same goal too!

They may require some changes but if your company can make necessary changes then they can work and make your company more successful!







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Chapter 9
My sons have disabilities

In 2010 my oldest son is 40. When he was very young he had a very high fever that would not go down. Thus he is diagnosed as “developmentally delayed”.

When he was 7 I married his mother but the problems he caused were so great and standards being how they are now he was sent to live with his father which was a mistake that cannot be corrected.

I love him dearly. He says that his father never had time for him. I never knew that. So you can figure out that he grew up alone.





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Basically because he has always been alone he is still looking for that parental relationship but don’t be mistaken. This man grew up alone and found ways to survive and he is still doing that.

He is still trying to participate in the game of life in any way he can but for reasons I’ve previously stated he has had no luck.

In 2010 my youngest adopted son is 25 and he has been diagnosed as “mentally retarded”. I don’t know what that means and I don’t care. He is my son and I love him.

We were always very close until I got hurt and all he had was his mom. I use the phone, money & email for him but I was in the hospital for years so I have lost a lot of credibility with him.
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But he experiences the same negativity that I do or I should say that I experience the same negativity that he does.

If you asked him: “Do you have a disability?” He would say: “NO. I’m very close to being normal” and he tries very hard to be accepted as such.

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I love my sons very much
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But one big difference is that in addition to his own disability he has a brother and a father with disabilities too and that makes things more complicated. His days are his own and his time is his own. Which is fine but there are other people who need him and there are other things to be done.
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He too is still trying to participate in the game of life but for reasons I’ve previously stated he has had no luck.

My #1 goal is to make sure that my sons feel loved, cared for and successful because if I don’t make them feel that nothing else will.

I don’t want for my sons to feel like they have to earn my approval, love or respect. I make sure to give it just as it was given to me by my savior.










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Chapter 10
I had the guy who wrote this book volunteer for me!

World Wide Ministry…From a Wheelchair

In August of 2010 I got an email from Toby asking for an opportunity to volunteer for the church. Toby types at about 5 words per minute, and I can hardly understand him when he talks. To be honest I was intimidated by Toby’s disability. I wasn’t sure if he physically capable of doing the kind of computer work I was thinking of.

But since he wanted to volunteer and I had a massive video project that I had just committed to, I figured I had nothing to loose.


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My goal was to take our entire sermon video library and upload it to a TruthCasting, a new video hosting company. Each video sermon takes about 1 ½ hours to upload. When I told him this project would take a lot of time, he told me “I have nothing BUT time.” If he was willing to learn, I was willing to teach him.

After a week of learning curve, Toby got the hang of it and has spent hundreds of hours on a volunteer basis entering and uploading 100% of our pervious video content. This has been tremendously helpful to the church…and incredibly stimulating for Toby. What I thought was going to be a 6 month project, Toby did in 6 weeks!




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One of the times I was dropping off work at Toby’s apartment, he said something that I will never forget. He said “You know…I’m not stupid”. That hit me like a ton a bricks.
Here is someone that the world thinks is useless…and he started to believe it himself. How tragic! Toby is now an integrated part of the team that is using digital technology to share the gospel at Trinity Church.

Toby has recently finished upload all 18 years of Gary Inrig’s sermons…I can’t imagine there are more than a handful of pastors in all of America that have that much content online…all thanks to Toby and his dedication. On a regular basis we have over 50 countries that visit our website. And the #1 area on our website is our sermon page. Toby has a worldwide ministry, right from home in his wheelchair. Thanks to Toby work, I was able to pass on some sermons to a Chaplin working with our troops in Iraq.
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We officially launched TruthCasting in October 2011. I did a short demo and we got to highlight Toby and his work. You can watch it by going to http://goo.gl/qKxc

In reflecting about my personal experience with our disabled community at Trinity Church, PRIDE was a probably at the top of my list. A few years ago, our Light & Power group (adults with disabilities) gave shirts to all the people in the class and some of the Pastoral staff. I remember NOT wearing it, because I thought people might mistakenly think that “I was one of them”. Thanks to relationships like I had with Toby, I’ve come a long way.





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One of the key turning points was a Disability Sunday we had at our church a few years ago (you can watch the full service at http://goo.gl/u0gD0 ...Toby shares his life story). If we define disability as “functioning lesser than”, when God looks at us, WE are the ones with the disability…which makes us ALL disabled to one degree or another. It was a very humbling moment at the end of the service to be “called to the table” and stand on equal ground as being one with a disability before our creator.

My experience in working with Toby has helped me in my understanding of the needs of the disabled. More then anything, they need a friend who is patient with them and who will love them as they are. Is that any different then my needs? Needless to say, I wear the shirt with pride, and am happy to call Toby a friend.
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Written by:

Bruce Herwig
Pastor of Communications
Trinity Church, Redlands CA

















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