Self Advocate Blog:

REALITIES OF BEING A SELF ADVOCATE--PART I:

 

 

 

First, I would like to say what isn't realistic in the Self Advocacy Movement and the various programs provided in the community. People with I.D.D. (Intellectual and Developmental Disabilities) who are part of the Self Advocate Movement in America are sometimes told they can be totally independent without family and loved ones nearby to keep and eye on them and help them where needed. This is not only unrealistic, it is completely false. I did live on my own in Old Towne Orange, California; from the Summer of 1989 through to the Fall of 2001just before the attack on the Twin Towers in New York and The Pentagon in Washington D.C. I had a very well paying full time job and lived comfortably. However, I was not totally independent by any definition of the word. There was always family (namely my mother and father) nearby keeping an eye on me, and helping me whenever I needed it. Some people with disabilities will say, "I don't have a disability, I have "An Ability." I'm sorry, but that is complete bull. That also isn't realistic. A disability is just what the word says it is, and that is the opposite of ability. Having disabilities means having limitations, and needing help and assistance from family, friends, and social workers from time to time.

I attended a SFO Conference (Speak for Ourselves) At the Antler Hotel in Downtown Colorado Springs last Fall with people who have disabilities and are Self Advocates. I heard a lot of things much like I described above. A lot of the Self Advocates were from the Boulder Area. Finally in a room with hundreds of Self Advocates, I had an opportunity to get and speak my peace. Basically, I said: "Having disabilities means just what the term says--there are limitations we have that others don't, and we need to accept these limitations. The key to a person with I.D.D. living a happy and productive life is accepting these limitations, but not letting them defeat him or her in life, but still strive to be all he/she can be (and what God wants him or her to be)." This is what I have tried to do with my life. I will say this. I will never be totally independent, and I will always need family, friends and social workers. If it wasn't for them, I would not be typing this article right now, I'd be dead, as some of you know.

So why am I a supporter of the Self Advocacy Movement? Where does Self Advocacy fit in? Why is Self Advocacy needed? I belong to a minority group in America which is "Number #1" as far as being victims of prejudice goes. Having disabilities means having limitations, but at the same time, it doesn't mean a person with I.D.D. can't do anything. If a person with I.D.D. wants to achieve something such as a college degree, excelling in music, art, or public speaking, and he is confident he can achieve these goals, then the person with I.D.D. should be allowed to try. My High School Advisors told my mother and I that I could never go to college. They tried to get my mother to discourage me from going to College and take Vocational Rehab instead. My mother told them: "I will not. If my son wants to try, and thinks he can do, I am going to let him try." I graduated from California State University--East Bay on August 31, 1979. This is August 28, 2017; so my 38th Anniversary in 3 days from today.

When someone tells an individual with I.D.D. that he or she can't go to college, can't excel in music, art, etc; because it's not fitting for him or her, that often stems from prejudice. Only the individual with a specific disability can really be the judge of what he can achieve and not achieve, and often needs to speak up. That is where Self Advocacy comes in. I will talk more on that in my next article.

End the "R-word."

" 'Spread the Word to End the Word' is a new organization and campaign to wipe the "R-word (when referring to people with Developmental Disabilities) clean from existence, even in its medical context. It needs to be stricken from the dictionary. Even in its medical context, it is now considered derogatory. There should be severe penalties in the schools for students who call other students with developmental disabilities the r-word."

--Quoted from a Facebook Post by Bill Baxter, Self Advocate.

Bill’s Journey to become a Self-Advocate

(as quoted from Bill's Post on The Arc PPR Website):

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"In 1954, after being stuck in child birth, doctors had to use a pair of forceps to get me out. Some damage was done. The Doctor, realizing what happened (and it was too late) came out and told my dad, “I’m sorry, but we should have taken him by C-Section.” Since my birth in 1954, I have been disabled. Unfortunately, my early school years were plagued by numerous problems. In school, I was held back several times."

"By 1963, a new program started up at Loara Elementary School for students with learning disabilities called EMR (Educationally Mentally Retarded). There, my teacher, Mr. Crum, was called from Francis Scott Key Elementary School in Anaheim, California to teach one of the EMR Classes. Mr. Boone was the other EMR Teacher, and so my Special Education began. I was in Mr. Crum’s class my 2nd and 3rd-grade year, and he was a fantastic teacher."

"Beginning in 4th Grade, my family decided it was time to mainstream me. Next, I began going to Francis Scott Key Elementary School in Anaheim, California. I was placed in regular classes with Mrs. Jurva–another fantastic teacher. She helped me to acclimate in regular classes. As it turns out, not every student in EMR had an intellectual disability (myself included). EMR was later renamed EH (Educationally Handicapped). Eventually, it was just called Special Education."

"While I was at Francis Scott Key Elementary School, some buildings were added to the lunch area so that Special Ed could be taught there. My favorite teacher, Mr. Crum, returned to Key School to teach one of the classes. While there, I often received remarks saying that I should have been in those classes. People said that I didn’t belong anywhere else. Eventually, the problem grew worse at Trident Junior High School. I was in the Advanced Marching Band at Trident, and fellow band members made it known that I didn’t belong in that band. Later, I went on to graduate from California State University-East Bay in 1979. After a while, my life became a social disaster, until the changing life experiences of Christianity totally changed my life forever."

"Now, many schools have adequate Special Ed Classes for disabled students who need them. Mr. Crum is gone now, but I owe him and Special Education a lot for all they did for me in making my life’s journey an easier one."

The Power of Adequate Health Care

"Adequate health care has helped make my life easier. Thankfully, it was through adequate health care that I was diagnosed with various disabilities. After diagnosis, I could receive appropriate medical care. Then, I could work with these disabilities and live a more prosperous life. Medicaid, for those who have it, is every bit as vital as to people with I/DD (intellectual and developmental disabilities) as Special Education Programs are. Furthermore, I want children and young people with I/DD to have a brighter future. How can that happen if Medicaid is slashed? Slashing Medicaid and funding to the people with disabilities who need it would be as detrimental as cutting Special Education Programs from our schools."

--As quote from the Blog on The Arc PPR Website by Bill Baxter, Self-Advocate.

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REALITIES OF BEING A SELF ADVOCATE--PART II:

People with disabilities make up the number 1 minority group in the United States of America when it comes to dealing with prejudice, ignorance and hatred. This is something that I pretty much have had to deal with my entire life, especially when I was going through grade school during my youth. Despite being born a forceps baby, and with Tourette Syndrome, and being "Different," I was mainstreamed in society and regular educational and social settings most of the time, even though I did have some "Special Education" during my 2nd and 3rd grade years, and then later on during my 10th and 11th grade years. As a youngster in grammar school, one of my mainstream leisure activities was developing some musical abilities.

Right after my 4th grade year, I started to learn how to play the accordion, and a year after that, the alto saxophone. I played the alto sax from 1967 through 1974. When I attended Trident Junior High School in Anaheim, California; from 1968 through 1970, there was an active Special Education Program for people with I.D.D. (Intellectual and Developmental Disabilities), but I was not part of that program, as I had been mainstreamed by my family since the 4th grade when I attended Francis Scott Key Elementary School, also in Anaheim. Many kids resented me because I was different, and they felt that I didn't belong with them. In the Fall of 1969, I made the Trident Junior High Advanced Marching Band as a second string alto saxophone player. I sat next to the two tenor saxophone players who resented me being in being part of the saxophone section. I won't mention their names. In fact, a lot of the band members made me feel unwelcome, not because In I couldn't play the sax (I could play it very well), but because I was different and they were down on that. The way that kind of prejudice and ignorance works, is that they (the tenor sax players and the other band members) would never own up to that.

The way prejudice works in a situation such as this that it didn't matter whether I could play the saxophone on an advanced band level, but simply "I'm different and I don't belong, and I have no business being in an advanced band. This is why Self Advocacy is needed. Unfortunately, I let all this prejudice and hatred defeat me in a way that I started losing interest in playing the saxophone more and more until I finally gave it up altogether after high school. This was one of the biggest mistakes I have made throughout the course of my life. The best form of Self Advocacy here would have been not only speaking up for myself, but continuing to practice and continue to improve. If others see how well you improve and strive to get better, they could eventually come around.

Playing the alto saxophone was eventually replaced by singing. I first became interested in singing in a choral group when I was living in Fair Oaks, California (Sacramento Area). A year or so after moving from the Sacramento Area to the Washington D.C. Area back eat, I began attending Thomas S. Wootton High School, and became a member of the Wootton High School Concert Choir. I also played in the band at Wootton High. While my interest in playing the saxophone decreased, my interest in singing increased. My interest and abilities in singing have been on the increase to this day, even in my old age. I have been singing in Church Choirs since 1975. In the Early 1980's I became interested in being a soloist and I have been doing that ever since. I took private voice training, mostly from an opera singer throughout most of the 1980's. I did encounter prejudice many times on this journey, but this time I didn't let it defeat me. I kept trying all the harder, and speaking up for myself when necessary. This is what true Self Advocacy is, but there are limits.

Sometimes being a Self Advocate does not win popularity contests, especially when it comes to "Exposing prejudice and ignorance." This is another important function of a Self Advocate. There are still people out there who feel I should not be performing solo in public, or even in a small group. This isn't because I can't sing well, because I can. A lot of people feel it isn't "Fitting" for me sing solos or in small groups because of my disabilities. There are also some who draw the conclusion that when I sing in church, God isn't being Glorified, and that I am only trying to build myself up because I am developmentally disabled. This I encountered in Orange County during the last couple of years I lived there before moving to Colorado. As it turns out, many people have been inspired whenever I have sung solos in church or anywhere else in public, and so God HAS BEEN GLORIFIED. One of the first things I was told when I first moved to Colorado Springs, Colorado; in the Summer of 2010, besides "Welcome to Colorado" was that I was banned from a particular Praise singing group. It's amazing how a person with I.D.D. can be banned from a singing group he didn't sing in or even ask to join in the first place. It is especially amazing as this particular person who is developmental disabled had sung in a chorale, and once in an opera back in the Mid 1980's.He had also sung the National Anthem at Professional Sporting Events for several years. But, they made sure I knew I was banned from the very start. My response was "Fine, but I am a professional singer, and can sing good or better than anyone in that group." As I said, that didn't win me any popularity contests. Exposing prejudice is one of the hardest functions a Self Advocate needs to perform, and quite often, a Self Advocate will make social mistakes. However, prejudice and ignorance needs to be exposed. A Self Advocate should not shy away from exposing prejudice, and if he makes a social mistake, he should learn from the mistake and try to correct it so he can become a more effective Self Advocate.

This is one of the challenges for Self Advocates in our society today: Exposing and dealing with prejudice. We need public speakers who are Self Advocates to speak out in the school districts against student bullies who harass and torment people other students and children with I.D.D; especially if their are any children or teens with I.D.D. who have been mainstreamed. This kind of prejudice and harassment should not be allowed in our schools, and there should be harsh penalties for student bullies who harass and torment students with I.D.D. just because they are different, and the bullies feel "They don't belong." It is the harassment and bullying that does not belong in our schools. This is another reason we need Self Advocates.

                                                    --Bill Baxter, Self Advocate.

REALITIES OF BEING A SELF ADVOCATE--Part III.

As I mentioned earlier, being disabled means just what the word infers. That is that there are limitations, more so than with people who don't have disabilities. I also said that just because a person has I/DD (Intellectual and Developmental Disabilities), and has more limitations doesn't mean the person can't do anything. One of the misconceptions with people who have I/DD or other disabilities is that people with I/DD have the same (or close to the same) limitations. This is completely false. For example, I have I/DD, as I was a forceps baby which rendered me Developmentally Disabled from birth, and I have Tourette's Syndrome. These disabilities have made it pretty much impossible for me to have a soul mate or have any girlfriends. I will be 63 next month (October 11), and I have never been married. It wasn't from lack of trying, believe me. I was engaged to be married a couple of years ago, but everything fell apart. Does this mean that everyone with I/DD can't enjoy happiness with a soul mate, or have boyfriends or girlfriends? Certainly not!! I have gotten to know others with disabilities in Colorado who have been happily married, or have boyfriends or girlfriends. Some of them have children and grandchildren. My best friend was happily married for 30 years. He is widowed now. There are a lot of people with disabilities who have not been able to enjoy love relationships, but there are also a lot of people with disabilities who have.

Among the special population of people with disabilities, each individuals limitations are UNIQUE. I have been told that whenever I express my views, I am very articulate. Does this mean that the lack of being articulate is NOT a limitation among the special population with disabilities? The answer is definitely no. A lot of people with I/DD are not articulate, but there are some who are. It is just like the fact that there are some people with I/DD who can't enjoy love relationships, but there are a lot of people who are happily married or have meaningful relationships with the opposite sex. Again, it all depends on the individual. Quite often, people make the mistake of "Lumping" other people with I/DD or other disabilities together when it comes to limitations. Back when I was in High School, faculty advisors felt I would never make it through college, and that I needed to consider Vocational Rehab being as a lot of people with I/DD can't make it in college. As it turns out "Forrest Gump" isn't all fiction. There are some people with I/DD who do make it in college, and I turned out to be one of them. I graduated form Ohlone College with an Associate in Arts Degree in June 1977, and California State University East Bay with a Bachelor of Science Degree in August of 1979. Lumping people with disabilities and their limitations together, and thinking that ALL (or close to all) people with disabilities are not articulate, can't make it in college, or can't have relationships, also leads to prejudice thinking. Again, this is why Self Advocacy is needed in America and other parts of the world. As far as each individual with I/DD or other disability goes, only he/she can be the judge

of his or her own limitations. If an individual with a disability feels he can achieve something, and feels his disability won't hold him back from obtaining his goal, he needs to be allowed to pursue that goal, and he needs to to speak up for himself if he is bombarded by naysayers.

Every individual is unique Every individual has his own unique limitations and potentials. This goes for EVERYONE, not just people with disabilities.

Bill Baxter, Self Advocate.

REALITIES OF BEING A SELF ADVOCATE—Part 4.

By Bill Baxter.

 

         In my past three articles on Realities of Being a Self-Advocate, written in 2017, I have talked about the concept that people who are intellectually and Developmentally Disabled (I.D.D.) and other disabilities have more limitations then people who don’t have disabilities. However, I also stated that this doesn’t mean people with I.D.D. can’t excel in anything. I pointed out that like every human being; each person with I.D.D. or other disabilities is “Unique.” Some people with I.D.D. make it all the way through college; a lot of people with disabilities do not. Few people with disabilities are good musicians where a lot of others with disabilities are not. Some have good relationships with the opposite sex, where a lot of people with disabilities (such as me) do not.  People of society often try to put everyone with I.D.D. and other disabilities into a box (EXAMPLES):

  1. People with I.D.D. and other disabilities should be segregated and never mainstreamed. Again, each person is unique. Some people with disabilities are better off being segregated, while others do well being mainstreamed.

  2. People with I.D.D. and other disabilities are not “College Material” and should not be permitted to attend college. I made it through college, and there have been others who have done likewise.

  3. People with I.D.D. and other disabilities can never excel in sports, music, public speaking, or any of the performing arts. I sang in a chorale for three years, have been in an opera, and I use to sing the National Anthem at Professional Sporting events from 2006 through 2011. There are others with I.D.D. with special gifts in these areas. A lot of Self Advocates are quite active in Public Speaking and they are very good at it. I have been a member of Toastmasters for over 27 years.

People with disabilities do excel in a lot of these areas mentioned above, yet they are quite often discouraged by others who don’t have disabilities, and they often face adversity with people who don’t have disabilities, especially if they have been mainstreamed.

         People with I.D.D. and other disabilities are considered a Minority Group in Society. They make up the Number #1 Minority Group when it comes to being recipients of social prejudice. The prejudice stems from people trying to put this minority group into a box. This is yet another reason Self Advocates are needed in our society. In a lot of ways, people with disabilities are like everyone else in that they have certain unique gifts and passions they like to pursue, and they should be allowed to pursue these, especially if they have excelled in these ventures in the past. I have excelled in singing and in Toastmasters/Public Speaking which are two of my biggest passions, but sometimes I still face adversity.

         People with disabilities sometimes have interests and passions they don’t excel at, yet they still want to pursue them. Naturally, there would be a lot of adversity they would have to deal with. Should people with disabilities be permitted to pursue activities and passions they don’t excel in where performance of these activities are mediocre at the most?  My answer to that question is that as long as there is no immediate danger to the person or life threatening situation involved, YES!

          I was born a forceps baby with some damage to my central nervous system. One thing my mother would never permit me to do was to go out for Football because of the immediate dangers involved from being hit hard or tackled. I did get to serve as a Varsity Manager on the Varsity Football Squad at Thomas S. Wootton High School in Rockville, Maryland; during the fall of 1973. In 1970, I began to pursue a passion and interest in something I was never much good at, and that was “Playing Basketball.” I played on a Church Basketball Team at First Presbyterian Church in Fair Oaks in 1970 and 1971.

         I was in the 9th Grade and was playing with kids who were college age. I was not very good and I got very little playing time. I only scored 8 points during the whole season in the Church Basketball league. My only accomplishment playing on that team was I never quit, and I didn’t give up. The team at Fair Oaks Presbyterian won the league championship. At the end of the season when each of the players got championship trophies, I received a special Basketball Trophy for being the “Most Courageous Player.” Later that summer, the family moved to the Washington DC Area on the East Coast. I had developed a strong passion for excelling in being a High School Basketball Player. I had learned to shoot baskets very well, but later I would find out that there was more to being a High School Basketball Player then being a dead shot with a basketball—MUCH MORE!! I began my junior year at Thomas Sprigg Wootton High School in Rockville, Maryland; in the fall of 1972, and I was enrolled in Special Education part-time as I had some learning disabilities. I decided to take the plunge and try out for the Varsity or Junior Varsity Basketball Team. For me, the try-outs were a flop. I didn’t impress anyone; in fact, many athletes at Wootton High resented me for even trying. Being a star basketball player or even an average High School Player just wasn’t part of The Almighty’s Plan for my life. Later, I came to realize that.

       Does this mean people should not pursue activities they don’t excel in? True, I didn’t succeed as a High School Basketball Player, but quite often, when one door closes in one’s life, a better one opens in its place which generates more success. A couple of the faculty members of the Wootton High Faculty saw how much I desired to be part of the life of that school despite my disabilities. One of them was a teacher in the English Department, Ron Bowes, who was also the Wrestling Coach at Thomas S. Wootton High School. He was looking for a Varsity Equipment Manager for the Wrestling Team and he asked me if I’d like to take on that position. I graciously accepted, and I took great pride in being a Team Manager. I had found something that I did excel in.

         The Varsity Football and Track Squad Coach, Jack Loudenberg, saw the work I was doing for the Varsity and J.V. Wrestling Teams, and he liked what I did. In the spring of 1973, he asked me to be the Team Manager for the Track Squad and later for the Varsity Football Team at the beginning of my Senior Year. I accepted both times and I continued to be successful. A lot of the Coaches in the Athletic Department grew to like me more and more, and a lot of the High School Athletes seeing this grew to like me and befriend me as well, including the ones who reviled me for trying to become a High School Basketball Player. I acquired High School Popularity in the fall of 1973. Thomas S. Wootton High School had only been in existence for 3 to 4 years when I attended there and became a Varity Team Manager. I became the First Varsity Team Manager in the history of that school to become a Varsity Three-Letterman. That went over big with the school and my life was changed forever and has had a positive impact on my life to this day. I am 63 years old now and happy with the way my life has turned out.

         I had finally given up the notion of becoming a Basketball Star. But in pursuing that passion in the fall of 1973, it led to something much better and brought great success in my life. Serving as a Team Manager enabled me to be myself and appreciate myself for who I really am. So yes, people with I.D.D. and other disabilities should be allowed to pursue their passions and goals; because, if they aren’t successful, quite often another door will open up where they will be successful. They will also learn valuable lessons which will have a positive impact on their lives.

        May all of you have a wonderful New Year 2018, and keep pursuing your passions and goals in your life and don’t let prejudice and adversities detour you from your goals. Let us continue to advocate against these adversities throughout the year 2018!

by Bill Baxter, Self Advocate.