Saturday, June 10, 2017

10 Things I Will Do This Summer: Centering Disabilties

10 Things I Will Do This Summer


As the Spring 2017 term of school is coming to a close, and summer is upon us (rain or shine), I wanted to write about how representation matters, and how we can all do a little bit to promote acceptance and the de-stigmatization of disabilities. I’ve created a list of ten simple things everyone can do this summer (and beyond) to learn more about disabilities, and create awareness.

1) When you are looking for a summer read, try choosing an author who includes people of different abilities, or an author who lives with disability themselves. I guarantee that when you hear from people living with disabilities it will give you a new perspective. In addition, publishers need to know that there is a market for people with disabilities.

2) Share something on social media about someone with a disability or something about legislation or programs that impact those with disabilities. We often feel like the world is too large and our voices cannot be heard, for sure, but even small acts like sharing on social media can make an impact. Imagine if you and all of your friends shared something, then all of their friends, etc. Change has to begin somewhere.

3) See a film or TV show that centers a person with disabilities or is made by a person with disabilities. If you are having a hard time finding something to watch, then take that as a note of how much stigma still impacts the lives of people with disabilities. It is getting better, but we have a long way to go.

4) Take a few minutes to look up a disability that you don’t know much about. There are a LOT of disabilities that are not visible in the media. Everyone has probably heard of autism, but what about something more obscure like Ehlers-Danlos Syndrome? I know that the more people I meet in the disability community the more I get to know about different ways that people are impacted, and how to work to make sure everyone’s accommodations are met.

5) If you can, take a class about disabilities or join a program like the Kiwanis Camp capstone. Or volunteer! Not everyone has the time or money to take a class, but if you do, try taking that extra class that is outside of your major, or do the Kiwanis Camp capstone. As Allan Cushing told us in an interview earlier this year, programs like the Mt. Hood Kiwanis Camp can literally be life-changing. Who knows, you might even change someone else’s life along the way!

6) If you are a sports fan, try looking for news about the Special Olympics and athletes who are differently-abled. You might learn more about adaptive sports, or do a quick internet search, and you’ll find something like the article “12 Incredible Athletes with Disabilities.”  Find someone to follow in your favorite sport who has a disability.

7) If you are an able-bodied person, take a few minutes the next time you have to go out to consider how a differently-abled person might be impacted. For example, some things to consider might be: are there any steps/stairs involved? Even one step can hinder some people. Is there an elevator? How far away is it? Are there chairs? Are there chairs for all body types? Some people need armless chairs, some people need armed chairs. How far do you have to walk? Some people might be only able to walk or stand for short periods, if at all. Do you have to wait in line? How might people get to this place with different modes of transportation? Also, try thinking beyond the idea that all people with disabilities necessarily use a wheelchair. However, don’t forget about wheelchair users. Is there room for a wheelchair? Do automatic doors work if they are there at all? Also consider people who are impacted by loud noises, bright lights, or chaos. How about people who need noise or light cues? This is only a mental exercise, but it can make you see anew.

8) Talk to your friends and family about disability issues. Do you ever bring up disabilities with your friends and family? If you know someone who is disabled or if you are disabled, you probably do. How do you talk about it? You might want to say that you are doing little things to bring more awareness into your life about disabilities. See what your friends and family have to say about it. Most of us will actually experience some kind of disability in our lifetime, so these are important conversations to have.

9) Try using person-first or identity-first language. (What is this? Wiki with info) It can be hard to change our language usage, no doubt, but it is important to some people. There is controversy about using person-first language, and controversy about curtailing language use at all. With that said, it doesn’t hurt to try to adjust the way we speak and write. Sometimes it is nice not to be completely offensive to people. Changing language may not take away underlying stigmas, but I’m of the mind that language does have some kind of impact. Don’t be hard on yourself. You won’t get it right one hundred percent of the time, but cultivating an awareness about language can be a positive experience. Even if you don’t want to change your language, just being aware of what person-first and identity-first language is is going to benefit you.

10) Be an advocate: for yourself and/or for others. Take your new-found knowledge of disabilities into the world with you. Be an advocate for disability awareness and acceptance. When you vote, remember people with disabilities. Be vocal about challenging others who may not consider those with disabilities. If you are setting up a venue for an event, make sure it is completely accessible. Are you hiring someone for a job? Make sure you are reaching out to people with disabilities too. Don’t think of making accommodations as a bad thing. Think of how it makes someone’s life better. Sometimes little things mean a lot. I’m not going to lie, sometimes being an advocate is difficult and frustrating. But, I can say it is truly worth it. To think of all of the change I’ve seen in my lifetime alone is exciting and gives me hope. There is more work to do, and that is why we need you too!

Tuesday, May 30, 2017

Artist Extraordinaire: Ping Lian Yeak


Photo of Ping Lian Yeak

As a student of art and art history, I’m always on the lookout for interesting art and artists. The other day I came across the artist Ping Lian Yeak. I was especially impressed with his expressive line work and wonderful use of color. It turns out that not only is Ping talented, he also has autism.


Ping Lian Yeak was born in Kuala Lumpur in 1993, and moved to Sydney, Australia with his family in 2006. They had lived in Australia before, but they decided to move back after Ping’s father died suddenly from a heart attack in 2004. When Ping was young, his parents knew he was different, because he was hyperactive and didn’t sleep much. At age four, he was diagnosed with ADHD with autism characteristics.

At a young age, Ping was also interested in art. His mother, Sarah Lee, wanted to improve Ping’s fine motor coordination skills, so she had him trace shapes through transparent paper. He eventually outgrew tracing, and went on to practicing other art skills, which he seemed obsessed with. This kind of keen focus on specific things is often found in people with autism spectrum disorders (ASD). This was a revelation for Ping’s mom, because she realized that Ping could use his art skills to make a living. Lee had been wondering for a while how Ping would support himself as he grew up given his issues with autism. Lee helped to grow Ping’s talent by hiring art teachers, and now Ping’s art has appeared in exhibitions in the US, UK, Australia, Germany, Japan, Korea, Singapore, and Malaysia.
Book Cover


In April of this year, a book about Ping’s journey written by his mother, "I Want to Be Artist: An Autistic Savant’s Voice and a Mother’s Dream Transformed Onto Canvas," premiered in the US at the Treffert Lecture series hosted by Marian University and the Treffert Center in Fond du Lac, Wisconsin. The book is available on Amazon and other retailers.

Ping still has limited communication and social skills, but his art has provided him with a great outlet for expression and for making a living. He works in charcoal, acrylic, water color, ink, and oil. In addition to selling his wonderful art pieces, he continues to donate his works to organizations and charities. To learn more about Ping, check out www.pinglian.com. Ping also has a facebook page at: https://www.facebook.com/pinglianyeak/.

Ping's Art

Ping's Art

Wednesday, May 10, 2017

OHSU SPARK Autism Spectrum Disorder Research Study

OHSU SPARK Study


I was on Facebook the other day, and an ad came up for the OHSU (Oregon Health and Science University) SPARK Study. Perhaps you have seen it too? I wanted to find out what it was all about and report back to you all, so I contacted Lily Pacheco, the OHSU SPARK Study Coordinator, to get some more information.

The SPARK study is a multi-area research study about autism spectrum disorders (ASD). It is funded for three years (2016-2019) so far, and OHSU applied to be a part of the SPARK study and was awarded the grant last year. OHSU is one of only 25 research centers in the nation chosen to participate so far. “SPARK is funded by the Simons Foundation, which is a non-profit organization out of New York City,” and according to Pacheco, “they have put over 64 million dollars into autism research so far.”

The SPARK study is special, because it “is already the largest autism study in the US. The SPARK data will allow [researchers] to better understand the etiology of ASD and develop more effective and targeted treatments,” said Pacheco. While the research does involve genetics, researchers aren’t looking to cure autism, but are looking for ways to improve treatments, and they definitely need the help of participants. The study is looking for adults and/or children who have been diagnosed with ASD to participate. They encourage the person with ASD’s biological mother, biological father, and up to one biological sibling to participate as well. Pacheco stated that “although it is great when biological trios sign up, we encourage everyone with a diagnosis to participate even if there is only one biological parent, no parents at all, or if the child is in foster care or adopted—everyone is invited to participate. A professional diagnosis of ASD is the only eligibility criteria for joining the study. Verification of the diagnosis, although not initially required, will need to be provided at a later date.” Pacheco said that participants will only need to “answer some medical and behavioral questions online, and if they consent to genetics, they will be shipped saliva collection kit(s) for genome sequencing. There is no cost to the participant for the sequencing or the interpretation of results.” Pacheco noted that any “medically significant results will be communicated back to the family through a designated primary care physician or genetic counselor.”

As someone who has participated in research in the past, I can tell you that it is exciting to think that your information can be used to further scientific understanding. The SPARK study is just as thrilling. “The SPARK database will have long-lasting impacts on the trajectory of autism research. Researchers will have the ability to study the samples over time, and answer questions about autism that they never were able to before,” said Pacheco, “it is a very exciting time in autism research!” Even though the genetic samples will be used for a long period, participants do not have to worry, because “SPARK data will not be shared with other researchers without the consent of SPARK participants.” Pacheco noted that “SPARK wants to create a community of research participants to help drive the direction of autism research, and also to answer unknowns about ASD, such as how people age with ASD, [but]…each researcher will need to re-consent study participants for each [additional] research study, and participants will have the opportunity to participate or not participate—participants are in control of how their data will be used.”

And after the genetic material is collected? Well, that’s the fun part for researchers. Pacheco stated that, “researchers and scientists simply do not know enough about ASD, which is why SPARK’s efforts are so important. A very large data set is needed to tell us more about the underlying mechanisms responsible [for ASD]. To date, approximately 50-60 mid-to-high risk genes are associated with ASD, however, scientists believe there are as many as 300. In addition, non-inherited de novo mutations have been discovered as also being responsible for an ASD diagnosis, so much more investigation into the heterogeneity of ASD needs to occur. Environmental factors and the interplay between environment and genes needs to be investigated too.”

All in all, this sounds like a wonderful opportunity for the researchers at OHSU as well as for people in our community. Even if you don’t have ASD, you don’t need to be bummed out that you can’t participate. According to Pacheco “the OHSU SPARK team does hire volunteers several times throughout the year, usually for 6-12 month time commitments. If someone is interested in becoming a volunteer [Pacheco] recommends checking https://www.ohsu.edu/xd/research/about/office-of-visitors-and-volunteers/become/open-opportunities.cfm for an opening and then applying,” Alternatively, they can contact Lily Pacheco at pachecol@ohsu.edu or call her at (503) 974-6478.

For more information, please see the video below and/or refer to the OHSU SPARK website to get started at: http://www.ohsu.edu/xd/research/centers-institutes/spark/

Let’s celebrate neurodiversity and science!





Wednesday, April 5, 2017

Part 2: Allan Cushing and the Life-Changing Mt. Hood Kiwanis Camp Experience


Allan Cushing, Director of Programs at MHKC, in top right button


This is part two of our interview with Allan Cushing, the Director of Programs for Mt. Hood Kiwanis Camp. Click HERE to see Part 1. In part two, we find out more about the campers and camp experiences.

Allan’s Favorite Memory

First, I wanted to know what Allan’s favorite MHKC memory was. He said there were so many to choose from, but one that stands out for him involves rock climbing, and an intrepid camper. It was the first year at Mt. Hood Kiwanis Camp for this camper, and “he was really nervous about trying the rock wall, and even scared about putting on a harness and helmet” Allan said. They started out by just touching the wall, and the camper would shyly touch it and then move back. He continued to slowly warm up to the idea of the rock wall, but still wasn’t ready to climb, even though all of the other campers had taken their turns. Allan asked him, “do you want to come up and touch the wall? Maybe put a foot on it?” The camper put two hands on the wall really slowly, and then, suddenly, as soon as his foot hit the wall he started climbing! He climbed up so fast, and he didn’t even stop for a breath. Before long the camper was at the top of the wall. It was unbelievable. Allan said, “when he got down and we unhooked him he was jumping and pumping his fists and screaming ‘I did it! I did it!’ There wasn’t a dry eye there.” Allan was blown away by the change that happened in just two hours, and how this camper was able to conquer a fear and accomplish something he didn’t even think possible. The camper continued the week feeling proud of his achievement, telling everyone how he speedily climbed the wall—“he was just beaming for the rest of the week” Allan said joyfully, noting that “there’s a lot of things like that that will bring a tear to your eye. Special stuff happens at Mt. Hood Kiwanis Camp.”

Favorite Activities at MHKC

Next I wanted to know what activity seemed to be the most popular with campers. There are so many great activities at MHKC that it is hard to pick one. Allan, who was a ropes facilitator for years, was partial to the ropes course, but he said he thinks the barbecue is actually the favorite activity for everyone. Part of the reason the barbecue is so popular is because the activity involves a skit night. Allan said, “we highlight the campers, and they are the stars of the show.” The campers get to perform for everyone—donors, counselors, parents, other campers, and staff. They sing songs, do comedy routines about staff, and they have a great time being stars for the night. It is special, because for a lot of the campers being the “star of the show” is not something that happens in their day-to-day life. It’s really special when they are the star of the show in front of 200-250 people” Allan said. The barbecue takes place on the last night, which is Thursday night. They also have burgers, hot dogs, baked beans, and all the normal barbecue stuff. They eat outside and a band plays all the classic camp songs. They even have older campers join them; people who have been coming to MHKC for 35 years! If it rains, they have dinner in the main dining hall, then they clear it out and set it up for the rest of the activities.

Fun on Rainy Days

Speaking of the rain, I wondered what happens to all the activities if it rains at MHKC. I know MHKC takes place in summer, but this is still the Pacific Northwest. Allan said that they still have a lot of activities if it is raining. If it is safe and not very wet, they do the activities outside, but when it gets too rainy or thunderclouds roll in, they move indoors. They have art, and games, but one favorite activity is the Adventure Beauty Parlor. For the Adventure Beauty Parlor Allan says they have a “big bin full of nail polish, nail polish remover, make-up, hair ties, and all these other things. We’ll put on music. It usually turns into a dance party talent show and singing contest too.” It is really fun for the campers, because everyone enjoys the nail painting, and the campers realize that it is okay to just have fun with everything. No one is there to judge anyone else, and the campers can just let loose and be silly.

Campers CAN!

Not feeling judged is important for us all, but especially for campers who might not always feel so supported. Along those lines, I asked Allan what he wanted campers to experience while at MHKC, and he said “I want them to feel loved and valued for who they are, to feel cherished for what they can do.” Allan says that a lot of campers tend to hear about what they can’t do, but at MHKC, “we try so hard to make all of our activities accessible for all of our campers.” Sometimes medical conditions will limit activities, but if the campers want to try it, the MHKC team will figure out a way to make it happen. MHKC is really “at the forefront of adventure courses as far as being able to adapt for all sorts of different body types and disabilities” Allan says. They have multiple equipment styles for different activities. For example, they have adaptive saddles for campers that want to ride a horse, but have trouble sitting up. The swimming pool is accessible, and “it is heated up to 85 degrees, so it is therapeutic” Allan notes, allowing for campers who use wheelchairs to “relax and extend their limbs that have been tight for the last couple of days.” MHKC counselors also encourage their campers to give things a try. Counselors gently “push campers outside that comfort zone, and help campers realize how special they are and how amazing the things are that they can do!”

A Respite for Caregivers

When counselors are reminding the campers of what they can do, staff reminds the counselors that they can also do this. Part of the joy of being a counselor is “being able to put yourself in other peoples’ shoes and help campers have an amazing time for one week.” “You forget sometimes what it means not only for the camper to be independent…but also what it means for the parents or caregivers,” Allan says. “It is a week when they might not have to be that primary caregiver, and just knowing that their camper is getting that special attention and getting to have fun and be a kid again, well, it is pretty amazing.” Allan talked about one camper who had tried about five other camps before coming to MHKC, but the camper had never had success at the other camps. On pick-up day, the camper’s mother came over to Allan crying. He was confused, and asked “’is everything alright?’ And she goes, ‘I just can’t thank you guys enough. This is the sixth camp that we tried to take our son to, and this is the only time he’s ever made it through an entire week.’ She hugged me crying, and of course I started crying too.” Allan said.

Camp Connections

Unfortunately, it is just hard for some campers to find places where they can get true and genuine relationships. "At MHKC, that’s what we are built upon—genuine interactions and close connections that allow people to feel comfortable making a life-long friend.” Allan says that he also talks to at least 3-4 campers everyday on the phone who just call to say hi. He talks to some other camper friends on instant messaging and Facebook. He says of his camper friends, “they just want to see how you are doing. They want a friend.” It is terrific that MHKC can provide those connections. After all, it is the connections we have with others that make us so utterly human, and why should people with disabilities be excluded from human connections? I think this goes back to Allan’s wish that MHKC instill in every camper that they are valued and loved for who they are and what they can do. In this, it is easy to understand how Mt. Hood Kiwanis Camp is more than just a camp—it is a life-changing experience for everyone!

Friday, March 24, 2017

World Down Syndrome Day: #NotSpecialNeeds

Cell Organization and Down Syndrome Test


March 21st marks World Down Syndrome Day, so for this week’s post I thought it would be a good idea to look into what Down Syndrome is.

Down Syndrome has been described throughout history, but it wasn’t until 1866 that John Langdon Down synthesized the diagnosis. Later in the 1950s, Jérôme Lejeune figured out that Down Syndrome was a chromosomal difference (ndss.org). In people with Down Syndrome, the twenty-first chromosome has a whole or partial extra copy. The whole or partial copy leads to visible differences like “low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm—although each person with Down syndrome is a unique individual and may possess these characteristics to different degrees, or not at all” (ndss.org). There are different kinds of Down Syndrome: Trysomy 21, Mosaicism, and Translocation. Although we know that there is a chromosomal difference with Down Syndrome, there is no definitive answer to the cause of Down Syndrome. The older a woman is when she gives birth does statistically increase the likelihood of a baby having Down Syndrome, but researchers don’t really know why.

As for the science of it, the above picture gives a brief synopsis of the genetic structure of our cells. We all have millions of cells in our bodies, and each cell has a nucleus. Within this nucleus are the chromosomes, and those chromosomes contain our genetic makeup or DNA. In recent years, scientists have been learning more and more about our DNA through gene mapping. What is pretty amazing is that we can see pictures of the Down Syndrome difference by looking at chromosomes! Included in the image is a snapshot of a test that shows the twenty-first chromosome with an extra copy.

No matter what causes Down Syndrome, it is important to realize that people with Down Syndrome are just regular people, and they are more than just their syndrome. To combat stigma, the #NotSpecialNeeds campaign released a video on World Down Syndrome Day that reminds all of us of this. The video is quite humorous and shows that people with Down Syndrome have human needs, not special needs. Be sure to take a couple of minutes to watch the video. If you have some time you might also want to check out the character Becky (played by Lauren Elizabeth Potter) on the TV show "Glee" who is also in the #NotSpecialNeeds video.




Citations
http://www.ndss.org/Down-Syndrome/What-Is-Down-Syndrome/
http://www.notspecialneeds.com



Wednesday, March 1, 2017

The Good IDEA: Education Guarantees for Students with Disabilities



There has been recent talk in the news about something in the educational field called the IDEA, but what is it, and why is it important?

The IDEA stands for Individuals with Disabilities Education Act, and it is a major amendment to the Education for All Handicapped Children Act (sometimes referred to as EAHCA or EHA, or Public Law (PL) 94-142). The EHA was enacted in 1975, and the IDEA was signed into law in 1990. It is “legislation that ensures students with a disability are provided with Free Appropriate Public Education (FAPE) that is tailored to their individual needs” (Wikipedia.org).

If you were born after 1975 you might wonder why this is so important. Before the EHA “public schools accommodated only 1 out of 5 children with disabilities” and many children were excluded from school all together (Wikipedia.org). Instead, many children were put in state institutions or simply received no education at all. In the book, Learners on the Autism Spectrum, Julie Donnelly talks about how her son who has autism was initially labeled “mentally retarded” and taken out of the mainstream classroom without any parent input (Donnelly in Buron & Wolfberg 2014, 389). This was before the EHA was put into law. Donnelly had to fight for help from the schools where her son went. Before the EHA, the schools were within their legal right to refuse to provide help or even an education. Donnelly’s son was not mentally retarded. He had autism and a very high IQ, but he needed special help in order to succeed in school. Donnelly’s son got help, because his mother was pushy and involved, and eventually the EHA was passed. Her son went on to earn a B.A., two master’s degrees, he got a job, and got married, but he was lucky to have a family who fought for him (Donnelly in Buron & Wolfberg 2014, 396). Others were not as lucky.

Thankfully, the IDEA now exists. The IDEA provides for more individualized components in the educational plan than the EHA did. There are six main pillars to the IDEA—the Individualized Education Program (IEP) that is tailored to each student’s need; Free Appropriate Public Education (FAPE) which means that it is available free for every student; Least Restrictive Environment (LRE) which means kids are not segregated from their non-disabled peers unless it is absolutely necessary; Appropriate Evaluation which is used to protect against mis-identification of children’s needs; Parent and Teacher Participation to ensure that families are well-informed and a part of each decision process; and Procedural Safeguards which are “designed to protect the rights of children with disabilities and their families” (Wikipedia.org). There are other parts to this legislation, but these are the main components.

The IDEA has come up in the news, because there are some voucher schools that require students with disabilities “to sign away their IDEA due process rights” in order to attend that school (WashingtonPost.com). To many people the idea of having to give up rights to the IDEA means giving up an education. Those of us in the USA are lucky to have the IDEA legislation (despite the added paperwork), because, as Donnelly points out in her article, people in other countries have no access to education for their disabled children and are amazed that this kind of legislation even exists at all (Donnelly in Buron & Wolfberg 2014, 393). For those of us in the disabled community, we definitely don’t want to go back to the days before the EHA and the IDEA. So, now that you know a little about the IDEA, you can spread the word: the IDEA is a good idea! Let’s make sure it sticks around.


References:
Donnelly, Julie A. “Growing up With Autism: One Parent’s Perspective.” Learners on the Autism Spectrum, edited by Kari Dunn Buron & Pamela Wolfberg, AAPC Publishing, 2014, 389-399.
https://en.wikipedia.org/wiki/Education_for_All_Handicapped_Children_Act
https://en.wikipedia.org/wiki/Individuals_with_Disabilities_Education_Act
https://www.washingtonpost.com/news/answer-sheet/wp/2017/01/17/betsy-devos-confused-about-federal-law-protecting-students-with-disabilities/?utm_term=.cdce73a2c455



Friday, February 24, 2017

Allan Cushing: The Life-Changing Mt. Hood Kiwanis Camp Experience

Allan Cushing, Director of Programs at MHKC in top right button

I was fortunate enough to be able to interview Allan Cushing, the Director of Programs for Mt. Hood Kiwanis Camp (MHKC). He shared with me a lot of great insights about camp when we talked. In part one of this interview, I find out how Allan became a part of camp, and what he and other counselors can and will gain from camp. 

First, I asked Allan how he initially became a part of Mt. Hood Kiwanis Camp. He said he is one of the “few people that actually came from Pacific University” and he “came up, absolutely loved camp,” and didn’t know what he was going to do after that. His counselor supervisor looked him up on Facebook and encouraged him to come back to camp, which he did. He returned to camp a number of times, and then two years ago he “moved into the role of Rentals and Volunteers coordinator.” In mid-November 2016, he became the Director of Programs.

Interestingly enough, Allan didn’t always know he wanted to work with people with disabilities. He started out his college career going to school to be a civil engineer! He thought he’d study engineering and “be a college baseball coach down the line,” but then he thought becoming a coach and engineering clashed a bit, so he moved over to teaching. He substituted as a para-professional when he wasn’t in school, and was on track to be a general education teacher teaching math. Then as he was signing up for classes the summer before his senior year, he found out about Mt. Hood Kiwanis Camp. He thought about his time doing peer tutoring in high school for the special education classroom, and thought MHKC would be a great experience, so he signed up. It turned out that MHKC was “life changing” for Allan.

After his first stint up at camp, Allan decided he wanted to be a special education teacher, so he continued his undergrad in Education with a focus in Special Education. After leaving Pacific, he went back to being a para-professional in the Hillsboro school district. He enjoyed it, but yearned for something more. “When the opportunity to be the Rentals and Volunteers coordinator opened up, [he] saw that as an opportunity to get involved with this organization, and it went from there.” He worked in that role for a year and a half, and then “the organization believed in [him] enough to give [him] a shot” at being Director of Programs. He is now really happy in his current role.

I was curious what Allan had gained as a camp counselor and how had it changed his life. He said he gained “a new perspective.” He had been a peer tutor in high school, and he would help in special ed classrooms. He was also a substitute para-professional throughout college, but it was different than MHKC. At camp, he “really got to see what made all of these people who have disabilities special,” and he really began to see people for what they could do instead of looking at their limitations.

Another important part of camp for Allan was “learning how to communicate with a lot of different people” including, but not limited to, the campers. In his first group up at camp, there were counselors who were from all different walks of life. There was an army veteran, an exchange student from China, another exchange student from India, Allan was a college baseball player, and another woman was in her 40s and was married with children. Everyone had such different backgrounds, but they learned how to work together as a “cohesive group.” Allan says, “it is something you can take into your everyday life.” You learn how to appreciate what everyone brings to the table.

Allan says that there is so much to gain from being a camp counselor. Not only will you learn how to communicate in the best of circumstances, but also how to communicate when “you’re tired, you’re sweaty, you’re hungry at times, and may feel a little frustrated.” Those communication skills will translate for you and you will be “successful anywhere. You’ll realize you are going to be fine outside of college.” You’ll also gain a better understanding that differences are not detriments. Instead, those differences are what makes a person valuable. Counselors will also find out how much people are actually the same despite their differences.

Allan reminds us that even if “you have no experience” Mt. Hood Kiwanis Camp still encourages people to become counselors and will prepare them with training and support. He said that “I would feel comfortable saying that a majority of our counselors have not worked with people with disabilities, and that’s okay. The important thing for us is for them to come in with an open mind.” Working with people with disabilities, Allan said, is like riding a bike. In the beginning, it’s new and can be challenging, but it eventually becomes natural. “You might fall a couple of times. You might fail…but the important thing is to get back up and keep trying. And remember you’re always surrounded by support.” You learn how to take feedback and implement new strategies. You also learn the great rewards that come from “putting the needs of someone else above your own.” When you are feeling exhausted, all you have to do is “remind yourself that it is just two weeks,” and you can get through it.

Counselors have a great team of professionals backing them up, so they don’t need to worry about making some mistakes. For example, Allan says “we have lots of campers who have had seizures. To counselors, it can be a scary thing, because it’s not the norm—especially to a counselor who’s never seen something like that before.” He remembers the first time he saw a seizure, and the staff member was very calm. He was wondering “why aren’t we doing any more?” But with experience, you learn how to calmly respond to a seizure, and the plan to follow when they occur. For the campers, this might be something they are totally used to, and eventually after training and experience, the counselors are confident in supporting people having seizures, even if it might seem scary at first. Allan said that when he was a counselor supervisor he would tell his group, “I may let you flounder in the water a little bit, to let you think through solutions, but will always be here to support you. We just want you to work through it.” When the counselors do finally work through a difficult situation they will realize they had it in them all along, and knowing they can do it is just an important as it is for the campers to find out the things they can do too.

___________________________

That’s it for part one. In part two of our interview with Allan, we find out more about the campers and what kinds of fun activities they participate in.

Tuesday, February 14, 2017

Celebrating Ed Roberts, Disability Advocate

Ed Roberts Google Doodle

On Jan. 23, 2017, the featured Google Doodle in the US was a cartoon drawing celebrating the 78th birthday of Ed Roberts. Ed was born Jan. 23, 1939 and died March 14, 1995 at the age of 55. During his life, he was a notable disability rights advocate.

Ed was “severely disabled from polio which he contracted as a teenager. He had virtually no functional movement and was dependent on a respirator to breath[e]” (ilusa.com). Ed, the first student with significant impairments to attend UC Berkeley, was inspired by the social justice movements of the 1960s and 70s, and he went on to start the self-help “movement that would radicalize how people with disabilities perceived themselves” (ilusa.com). In a letter to Gini Laurie in 1970 Ed stated, “I’m tired of well meaning noncripples with their stereotypes of what I can and cannot do directing my life and my future. I want cripples to direct their own programs and to be able to train other cripples to direct new programs. This is the start of something big—cripple power” (ilusa.com).

Photo of Ed Roberts
Among many notable achievements, Ed “was awarded a MacArthur fellowship; and he was co-founder and President of the World Institute on Disability” (edrobertscampus.org). He also inspired a world of disability rights advocates, and the Ed Roberts Campus was created in his honor. The idea for the Campus came shortly after his death, and is a “universally designed, transit-oriented campus located at the Ashby BART Station in South Berkeley. The ERC houses the offices of the collaborating organizations as well as fully accessible meeting rooms, a computer/media resource center, a fitness center, a café, and a child development center” (edrobertscampus.org). It is 80,000 sq. ft. and is a beacon of universally accessible design featuring a helical ramp, accessible elevators, automatic doors, wide corridors, restrooms for people with all abilities, specially designed signage, and hands-free sensors and timers among other innovations.

Interior of Ed Roberts Campus 
I imagine Ed would be proud of the ERC, and he should as well be happy with the fact that he has inspired so many people with disabilities to take life by the reigns. Even if people don’t know about Ed, surely they have been impacted by the disability rights movement. Cheers to Ed and a happy belated birthday!

Citations: