Response to IACC meeting

I’D LIKE TO RESPOND TO THIS ARTICLE (“AUTISTIC ADVOCATES CLASH WITH AUTISM PARENTS AT GOVERNMENT COMMITTEE MEETING”) BY SAYING THIS: NO ONE, AND I MEAN NO ONE, SHOULD BE TALKING ABOUT WHAT’S BEST FOR ME BESIDES ME. YES, MY PARENTS KNOW ME BEST IN THE WORLD, BUT THAT DOESN’T MEAN THEY KNOW BETTER. IT PERPLEXES ME THAT WE ARE HAVING THIS DEBATE STILL, AND PEOPLE DON’T SEE HOW LUDICROUS IT IS TO HAVE AN AUTISTIC GROUP REPRESENTED BY NON-AUTISTICS. IMAGINE THE NAACP REPRESENTED BY WHITES. RECALL THAT IMAGE OF A GROUP OF WHITE MEN SIGNING LEGISLATION LIMITING WOMEN’S BIRTH CONTROL… YET IT IS TOTALLY OKAY FOR MANY AUTISTICS TO BE AFFECTED BY THE WILL OF NT’S.

I SIMPLY SAY THIS: IF YOU WANT THE VIEWS OF NONVERBAL AUTISTICS TO BE HEARD, INVITE THEM TO THE TABLE. MAKE SURE THEY CAN ACCESS THE MEETING WITH THE SUPPORT THEY NEED. SEEK OUT AUTISTIC PEOPLE WHO ARE NONVERBAL, AND LISTEN TO WHAT THEY HAVE TO SAY. LET YOUR EXPERIENCE OF HOW YOU RAISED A PERSON WHO IS AUTISTIC BE SHADOWED BY THE AUTISTIC PERSON’S EXPERIENCE OF NOT FITTING IN A WORLD THAT THINKS HE IS BROKEN.

RIGHT NOW, THE BIGGEST HURDLES WE FACE ARE THE ATTITUDES OF COMMUNITY MEMBERS AND THE IMPOSED LIMITS OF PARENTS. LET YOURSELF ABSTAIN FROM THE PITY PARTY THAT SEEMS TO BE SO MUCH A PART OF THE AUTISM COMMUNITY, AND BELIEVE THAT YOUR CHILD WILL CONTINUE TO DEVELOP AND GAIN NEW SKILLS. MOST OF ALL, GIVE THEM THE CHANCE TO HAVE WHAT WE EACH ASPIRE TO: AN INDEPENDENT LIFE, LOVE, HOUSING THAT SUPPORTS THEIR VISION OF WHAT THEY WANT, A CHANCE TO WORK, MAKE A DECENT LIVING, AND FIND SATISFACTION IN THEIR DAILY LIFE. BESIDES THAT, THEY WANT TO BE ACCEPTED FOR WHO THEY ARE OR KNOW THAT IF THEY NEED SUPPORT, THEY CAN GET IT. FOR ME, THIS IS WHAT OUR RESEARCH DOLLARS SHOULD BE SPENT ON. GIVE AUTISTICS THE MAJORITY PLACE AT THE IACC, AND I GUARANTEE YOU WILL SEE THESE THINGS GET ADRESSED IN A WAY THAT MAKES SENSE FOR US.

#IACC

Advertisements

Believe

NEVER LET SOMEONE TELL YOU THAT YOU CAN’T ACHIEVE THE IMPOSSIBLE. KEEP TRYING TO FIND THAT ONE PERSON WHO BELIEVES IN YOU AND THE VISION YOU HAVE FOR YOUR LIFE. IT MAY HAPPEN FAST, OR YOU MAY WAIT YEARS LIKE I DID. JUST KEEP BELIEVING IN YOURSELF.

Should I open a school just for people who use RPM?

“I have a dream to open a charter school [in Oregon] to teach RPM. I work with people with autism and feel that the special education doesn’t give them an adequate voice or mastery of language. What do you think?

Do you think a school is possible?”

THANK YOU FOR WRITING. YOU RAISE AN INTERESTING QUESTION. CHECKING MY BIAS AT THE DOOR, I WOULD UNEQUIVOCALLY STATE THAT SPECIAL EDUCATION LEAVES KIDS LIKE ME ON THE SIDELINES A MAJORITY OF THE TIME.

GOING TO SCHOOL AS A PERSON WHO CAN’T COMMUNICATE IS AWFUL. I WAS TREATED LIKE A STUPID PERSON, BUT NO NEEDLESS EFFORT WAS MADE TO HELP ME FIND MY VOICE. ONCE I HAD A WAY OF COMMUNICATING, HOWEVER, IT TOTALLY CHANGED, AND MOST IMPORTANTLY, I MADE FRIENDS.

I DON’T ADVOCATE FOR SPECIAL SCHOOLS OR SPECIAL PROGRAMS – INSTEAD, I BELIEVE PEOPLE BELONG TOGETHER WITH DIFFERENT HARDSHIPS AND ABILITIES, BACKGROUNDS AND RACES, ECONOMIC LEVELS AND GENDER IDENTITIES, SEXUAL ORIENTATIONS AND FAVORITE POLITICIANS.

I THINK THAT KIND OF SCHOOL IS POSSIBLE, BUT I DON’T THINK IT’S NECESSARY. I BELIEVE IT WOULD MAKE MORE SENSE TO REALIZE THAT VISION IN ONE’S NEIGHBORHOOD SCHOOL. I WOULD RATHER SPEND MY ENERGY TRYING TO CHANGE PERSPECTIVES OF SCHOOL BOARD MEMBERS AND TEACHERS RATHER THAN REINVENT THE WHEEL.

I KNOW I AM VERY LUCKY TO BE ABLE TO ATTEND A PUBLIC SCHOOL – BUT MORE PEOPLE NEED TO CLAIM THEIR PLACE RATHER THAN LEAVE ALTOGETHER. BELIEVE ME, IT’S POSSIBLE FOR MORE PEOPLE LIKE ME TO BE IN GENERAL EDUCATION – WE JUST NEED A CHANCE TO TRY.

A BIGGER MOVEMENT

Niko in front of the White House

Niko in front of the White House

(Originally published by Disability Rights Oregon)

Sixteen-year old Niko Boskovic won first place in a prestigious essay contest, and was selected as a delegate to an annual educational program. 

But, the program sponsor, the Independent Order of Odd Fellows, withdrew his prize after learning Niko experiences autism and uses a letter board to communicate.

Our attorneys worked with Niko and his family to protest his treatment. In the end, the national board reversed its decision and allowed Niko to participate in the trip.

By: Niko Boskovic

We flew out of Portland on a very early flight, which got us into Philadelphia late Saturday evening. That evening, we started to experience that East coast heat I had heard about, and it never let up until we got back to Portland.

Young People from Across the World

The trip was a bit of a whirlwind! It started off as a group of Oregon and Washington delegates, and eventually grew to over 150 youth from all over the world. There were people from Norway, Finland, Sweden, Canada, and the U.S.

It was interesting to see so many young people in one place with one purpose: to represent the values of the Odd Fellows on a national scale. Over the course of 11 days, we did so many things, from visiting historic sites to touring the United Nations’ main chambers.

As we learned about the history of the U.N.’s policies and actions throughout the world, I was struck by how many of its policies will affect the futures of so many countries.

Now I know that means I need to speak publicly about our struggles and our gifts; about our hopes and dreams for the future; about our intrinsic right to dignity and an independent future.

Speech Contest

My fellow delegates and I also participated in a speech contest.  We spent hours working on our speeches. Then, we presented them before a panel of judges.

I really liked the speech of the young woman from Washington who spoke so passionately about science. All of the finalists were remarkable because of their desire to make a difference in the world.

Niko in front of a U.N. banner about including people with disabilities in UN development goals.

Niko in front of a U.N. banner.

Historical Landmarks

The fact that we got to see so many landmarks was a bonus. Awesome sites like the view from the observation deck of the Empire State Building, or the New York City skyline as you approach it by bus.

I’ll always remember the way I felt when I was standing in front of the Lincoln Memorial with all those people, and yet that moment felt so private.

I remember the way the water from the World War II fountain felt so good on my feet on that hot, muggy afternoon, and how the chatter from the girls I was hanging out with tickled my ears. The entire trip was a sensory feast, and I couldn’t get enough.

After spending so much time with this group of young people, I walked away feeling like I was part of a bigger movement, one that will make a difference in the world.

A Bigger Movement

After spending so much time with this group of young people, I walked away feeling like I was part of a bigger movement, one that will make a difference in the world.

The thing is, I already knew I wanted to fight for the rights of people with disabilities. I just couldn’t picture what that would look like.

Now I know that means I need to speak publicly about our struggles and our gifts; about our hopes and dreams for the future; about our intrinsic right to dignity and an independent future.

I am so incredibly thankful to the Odd Fellows Lodge that selected me for this opportunity and to Disability Rights Oregon for its help.

TRIP ENDING

THE TRIP IS COMING TO A CLOSE. IT HAS BEEN A WHIRLWIND THAT HAS BEEN A MIX OF EMOTIONS: EXCITEMENT, ANTICIPATION, AND MAKING NEW FRIENDS. I AM ESPECIALLY GRATEFUL FOR THE PEOPLE WHO REACHED OUT AND TRIED TO TALK WITH ME. I KNOW IT TAKES TIME, AND KIDS MY AGE OPERATE AT WARP SPEED.

FOR THE TEENS WHO HAVE A DISABILITY, I WOULD STRONGLY ADVISE YOU TO APPLY FOR NEXT YEAR’S CONTEST. IT’S INCREDIBLY IMPORTANT FOR YOU TO BE HERE AND SHOW OTHERS THAT WE EXIST. DIFFERENT EXISTS IN EVERY ASPECT OF SOCIETY, AND WHEN ORGANIZATIONS SANITIZE WHO IS SHOWN, IT DOES NO ONE ANY FAVORS. I AM THANKFUL FOR THE TRIP AND EVERYTHING I’VE SEEN ALONG THE WAY.20121474_745117658993777_1972592196991605971_o

GOOD NEWS!

HEY EVERYONE,

I WANTED TO LET YOU KNOW THAT I AM DEFINITELY GOING ON THE UN TRIP NEXT MONTH! THERE WERE PEOPLE TALKING TO PEOPLE FOR A WHILE, AND IT FINALLY GOT WORKED OUT. I COULDN’T BE MORE EXCITED TO GET ON A PLANE!

I WANT TO THANK EVERYONE WHO SPOKE OUT FOR ONE AUTISTIC KID WHO HEARD THE WORD “NO” AND SAID, “WHY NOT?” ALSO TO GORDON AT DRO FOR BEING MY VOICE. TO MY PARENTS I AM ESPECIALLY GRATEFUL, AND UNDERSTAND THAT THIS IS MY DESTINY. YOU HAVE TAUGHT ME WELL.