This Sunday, July 10th, Familia Unida Living with Multiple Sclerosis, a former
Reeve Foundation Quality of Life Grantee based in East Los Angeles will be hosting their 9th annual Wheelchair Wash Day.
At this free event, attendees can have their wheelchairs or scooters washed. Attendees can also be pampered with services including haircuts, manicures, wheelchair tune-ups, activities, and games for children.
The Wheelchair Wash day began after Irma Resendez, the Founder of Familia Unida, was diagnosed with Multiple Sclerosis. Experiencing feelings of isolation, prejudice and discrimination after her disability, Irma wanted to bring awareness to the fact that people living with a disability have many abilities. Each year, the wheelchair wash celebration receives support from community partners and elected officials in the Los Angeles Area.
For more information about the wheelchair wash event and for more information about Familia Unida visit
www.familia-unida.org.
Eric Gibson, and Juan Garibay, Reeve Foundation Ambassadors, and Regional coordinators talk about the two day train the trainer peer mentor training which took place in Jacksonville, FL.
“This past week we attended the two day "Train the Trainer" Peer Mentor training in Jacksonville, FL. The purpose of this training is so that we will be able to train new peer mentors ourselves. The first day of the meeting began with a breakfast, welcome, and introductions. The mentors discussed various topics including how to be an effective peer mentor, ethics, values and peer support.
The first day was an 8 hour session where we learned information which we will be teaching to new peer mentors. The day was long and we received a lot of information. We also had a chance to meet with the other Regional Coordinators in the peer and family support program. The coordinators were able to get together after the training for a meet and greet. It was a great opportunity to share ideas with other coordinators about the program. We have a great support team and are looking forward to doing a lot of good work for the program with them. On the second day, we had to get up early for the training. As Regional Coordinators we had to role play. We had a great time role playing as if we were actually doing a training. Overall we think that the training went well and think we have a very strong team which will do great work together. We are now headed back to LA and will be able to conduct trainings to train new peer mentors on the Pacific Coast.”
Eric Gibson and Juan Garibay
Peer and Family Support Program Regional Coordinators
On February 16th, 2012 Navajo Nation President Ben Shelley signed the Adult Protection Act into law. The Act, also known as the “Doris Act” in honor of Reeve Foundation Peer Mentor Doris Dennison, protects adults aged 18 to 54 from physical, verbal, sexual and emotional abuse, and from neglect or abandonment. Doris, who has a spinal cord injury, has advocated for the Act for six years because of her personal experience with abuse. Prior to the Act’s passage, there was no law on the books to protect vulnerable adults with disabilities in the Navajo Nation.
The Foundation’s Multicultural Outreach Program has a strong presence on the Navajo Nation, including training peer mentors to work with people who are paralyzed across the nation and development of alternate-format health materials.
Below is a picture of Doris Dennison and Najavjo Nation President Ben Shelley
Ruben Rios, Reeve Foundation Ambassador shares about receiving an award from the Long Beach Aquarium of the Pacific and being appointed to L.A. City Commission for People with Disabilities
"Well, we are halfway through Winter which means my favorite time of year is right around the corner. I had a blast last weekend watching the Super Bowl with friends and family and the game was great as well.
These past few weeks have been busy and exciting for me. On January 28th & 29th I was at the Long Beach Aquarium of the Pacific, a 2007 and 2009 Quality of Life grantee, for their 9th annual "Festival of Human Abilities". The event had approximately 1500 people in attendance and at the festival I demonstrated how I paint to the aquarium's visitors. On Sunday the 29th, the Festival presented me with the Glen McIntyre Heritage Award which goes to people who have served the disability community. The award is in recognition of dedicated service for people with disabilities in Southern California and is named after one of the Founder’s of the Festival, Glen McIntyre. I was honored to have known Glen and sharing the day with his family felt great.
Last, but not least, the L.A .City Council unanimously appointed me to the city’s commission for people with disabilities. I would like to thank L.A.'s 4th district supervisor Don Knabe for nominating me. I hope to be able to help the Board of Supervisors improve the quality of life for those living with physical disabilities and limitations. I feel lucky to have been chosen by Supervisor Knabe and I am looking forward to this opportunity.
Currently I am working on sending a piece for the Christmas contest for the Associate of Mouth and Footpainting Artists as well as getting ready for the Art of Rancho exhibit which will take place in the Spring. I will be writing about this event as it draws closer."
Ruben Rios
Reeve Foundation Ambassador
Hi Everyone
I would like to share the story of my friend JC who was a victim of gang violence in 1996. He was shot seven times at close range, barely surviving his wounds. JC was not a gang member, but he was in the wrong place at the wrong time. He was left paralyzed from his chest down and after months of rehabilitation at Rancho Los Amigos National Rehabilitation Center he was discharged from the hospital to start his new life as a paraplegic with a T4 complete injury. JC left with the tools necessary to live his life as a SCI victim, but that did not prepare him for the mental journey that he would have to engage. JC fell into depression like so many individuals once they suffer a life changing event. He preferred not to go out with his family or friends, when he did go out he was self conscious. His life changed once again for the better one afternoon as he was leaving from a doctor’s appointment at Rancho where he met David Buck (also a paraplegic with a T4 complete injury); this meeting would change JC point of view about what people with disabilities are capable of once their minds are set to succeed. David blew JC mind for the simple reason that David lives and independent life. David had his own car with hand-controls something that up to that point JC had no clue of how he would drive if he chose to. JC and David became real good friends. JC became involve with wheelchair sports at Rancho. He excelled in football and hockey as player and team captain for Rancho’s Bulldogs team. JC enjoys snow skiing and motorcycle riding. JC has a passion for helping new spinal cord injury and anyone with a disability to overcome their obstacles. He has served as a mentor to many people who suffer from a disability. JC lives his live to his full potential and his favorite quote is “LIFE IS NOT OVER UNTIL IS OVER!”
Hi everyone! It’s been a while since my last post, but I’m here to post regularly and keep you updated. There’s so much happening where I work at Rancho Los Amigos National Rehabilitation Center (Rancho) that will benefit our lives and I look forward to sharing them with you.
First, I want to share some exciting information with our community about our new project that will assist us in improving our quality of life. The National Institute on Disability and Rehabilitation Research (NIDRR) has awarded a “Spinal Cord Injury Model System (SCIMS)” grant to Rancho. The overall objective of this grant is to generate new knowledge that will directly contribute to improving health, function, and community participation for persons with a spinal cord injury (SCI). In this research project, we will identify whether a home-based intervention that was demonstrated to be effective at reducing chronic shoulder pain in persons with SCI could be used as a preventative program to decrease the rate of shoulder pain onset. Additionally, we will test whether a more interactive version of the prevention program would also enhance community participation and self-efficacy for exercise engagement, in addition to further lowering the rate of shoulder pain onset.
Our project has more details than what I’m describing here, but I want to keep it short as I plan to keep you all informed about what I will be working on in this project and of all the exciting things that I will be doing in the near future.
Best,
Juan
Hi Everyone,
Just wanted to share information on one of the projects that I’m involve with here at Rancho Los Amigos National Rehabilitation Center. Its call “Preserving Community Mobility in Wheelchair Users". I'm excited about this project because the older I get the more concern I become about finding different ways to preserve my shoulders. I don’t have any shoulder issue at this point and I want to keep it that way. The engineers and therapist involve in this project will get to study the mechanics of how we put our wheelchairs into our car/truck/van (with no ramp or lift) and the stresswe put on our shoulder(s). They will do this by video taping and putting sensors on your upper body and wheelchair to identify where the stresses and forces are carried out.
The first outcome is to provide guidelines for shoulder-preserving transfer and lifting mechanics, including identification of specific techniques (ex: hand placement, body positions and movement patterns) that are least stressful for the shoulder using the findings of the experimental data. The second outcome will be to provide factual guidelines for designs of wheelchair frames and automobiles that are transfer –friendly and less stressful to the shoulder.
Best,
Juan
Eric Gibson, Reeve Foundation Ambassador, shares about attending the Summit Against Violence Extremist (SAVE) in Dubin, Ireland
On the week of June 27, 2011 Google, Tribeca Films and the Counsel on Foreign Relations (CFR), for the first time ever, hosted a Summit Against Violence Extremist (SAVE). The summit was a collaboration of over 90 ex-violent extremists from around the world along with four hundred individuals from numerous walks of life, including survivors of violent acts and their family members. The purpose of coming together was to hold a dialogue about violence, share their personal experiences, and hopefully brainstorm potential solutions to stop violence that crosses racial and religious barriers.
It was amazing to me that former Skin Heads, Gangbangers, Muslim extremists, and individuals from various opposing religions could all come together peacefully to share their trials and tribulations and work to find a common ground for a future with out senseless violence and millions of lost lives.
There were several panel discussions of which one I was a speaker. It was entitled Radacalization: Common Origins but Different Extremes. The panel included myself, two former skin heads and a Muslim extremist. The discussion centered around how each panel member was lead into the lifestyle that we choose. The commonalities were that we all had were low self esteem, weak family values and support and that we all longed for a sense of belonging. After dialogueing about each of our extreme version of our lifestyles the discussion turned to solutions to overcome the ignorance that causes the violence. The panel helped me to gain a greater understanding and respect for all of the individuals and blossomed friendships that I believe will last for many years to come.
Hundreds of stories were shared and many tears were shed with the realization that we are all only human no matter what race, religion, or gang we belong to. Google created a website especially for the summit attendees to continue to share their progress and I have included the other sites that supported the summit.
www.againstviolentextremism.org
www.youtube.com/user/formers
www.bbc.co.uk/news/world-europe-13939227
The website is an opportunity to dialogue with former extremist and survivors around the world to continue to learn from each other and grow united. The summit has funded several projects that were birthed from the break out panels.
This was a bold move to undertake such a dynamic group of individuals with the hope of reducing violence in our future. Only time will tell if this project was successful however, I already know that it has been life changing to many especially me!
Eric Gibson, Reeve Foundation Ambassador
Ruben Rios, Reeve Foundation Ambassador shares about his weekend at the "Festival of Human Abilities" at the Long Beach Aquarium of the Pacific, a past Reeve Foundation Quality of Life Grantee.
Peter Martineaux, from the Long Beach Aquarium of the Pacific which is approximately 15 minutes from my house, invited several artists including myself to participate in the Aquarium's annual "Festival of Human Abilities" weekend. The event took place on Jan.29th & 30th
We, the artists, were there to set up a work area so that we could demonstrate how we paint. Many of the guests made it a point to come up to me and let me know how much they liked my work. It makes the experience so worthwhile when I see people come up and say things like, "Wow, I couldn’t do that with my hands! You're such an inspiration!!” I just smile and say, “Thank you.” To be honest, 99% of the credit goes to my friends & family. The best support system a guy could ever ask for. If it had not been for them, I sincerely doubt I'd be painting today. Their strength, encouragement, loyalty, and love got me through the process of healing. I love who I am today, and wouldn't have my life be any other way. New friends have enhanced my life profoundly.
The Christopher and Dana Reeve Foundation has given me a sense that I’m doing even more to help and inspire others. Christopher Reeve gave spinal cord injured victims a face and a voice. As an ambassador of the Christopher and Dana Reeve Foundation, I now have a voice.
Ruben Rios
Reeve Foundation Ambassador
Reeve Foundation Ambassador Robin Wilson-Beattie shares about a conference which she attended in Atlanta, GA a few weeks ago
A couple of weeks ago I had the rare experience of being snowed in. Atlanta got snow and ice, and the city seemingly came to a halt. The Deep South is not exactly known for harsh winter weather, so it was definitely something to behold. Most people were stuck at home- but not me! I was fortunate enough to be snowbound at a retreat center, attending the inaugural Georgia Winter Institute. This amazing event was a conference sponsored by The Arc of Georgia, Georgia State University and Center for Leadership in Disability, and the Georgia Council on Developmental Disabilities. The main focus was to bring people together to discuss unique ways that focused on person centered planning, storytelling, and understanding that everyone has gifts to give to communities. The attendees included professionals in the disability field, self and systems advocates, and family members of people with disabilities. I seemed to be the only person there with a spinal cord injury, so I was happy to represent! LOL
It was a very intense 3 day session, and it took me a week to fully absorb and digest everything I learned. For once, I found myself doing more listening than talking in the workshops (trust me- silent is not a word used in conjunction with my name!). I was worried that I would miss out on hearing some of the wonderful ideas and action plans others were proposing on building better communities, and ensuring that people with disabilities get to make decisions on their own lives- the way they want to. The workshops were led by Tom Kohler, John O'Brien, Connie Lyle O'Brien, Bruce Anderson and De'Amon.
Due to the generosity of the Georgia Advocacy Office, every participant received a copy of the book, Waddie Welcome & the Beloved Community, by Tom Kohler and Susan Earl. Tom and Susan also read excerpts and talked about what it meant to know Mr. Welcome, and why this book was created. This powerful book showed how one person with a courageous spirit could touch the lives of so many people, forming a community of support, person by person. Mr. Welcome of Savannah, Georgia had a dream of living in a real home, with a family, and leaving the nursing home he was stuck in. How this was accomplished was truly astounding, given his age, disability, race, and economic status. There were so many lessons that can be explored from this book, but there were a couple that stood out for me.
Mr. Welcome’s story demonstrated that no matter what stage your life is in, you have the ability to make changes and decisions. Mr. Welcome was in his 70’s when he worked on making his dream come true. He was an African American senior citizen with cerebral palsy, and with the support of some remarkable allies, he was able to live in a real home. He wanted out of that nursing home, able to live in a house with a family, where he could smell food cooking, hear children playing, and socialize in his local community. What a powerful lesson! As a person with an SCI, I often meet other people with spinal cord injuries who feel that they do not have control over their lives, anymore. Sometimes, as people with disabilities, we feel as if certain goals are forever out of our reach. As we age, we especially think they are impossible to obtain. Mr. Welcome’s story is a prime example that this is not true, and if you believe in it strongly enough- you can make it happen.
I also feel that the other important lesson this book shared is that with the support of allies, people with disabilities have the ability to expand the definition of family and build an inclusive community of choice. Mr. Welcome shared his gifts of hope, humor, listening- and his supporters were able to accept and be inspired by them. This sort of exchange is powerful, and strengthens communities. We all are stronger when we open ourselves up to change and inclusion. I am one of those people who see disability as a natural part of the human condition. I encourage people with disabilities to take the initiative and reach out to others! No one on this planet would be here, without others, regardless of ability. We have the right to be here, exist, and be a part of society. Yes, you may meet with some rejection, but as most us know- persistence is the key. Tom Kohler met with 39 rejections before he found a citizen advocate for Mr. Welcome. Although this fact was printed in the book, I insisted on asking Tom privately if it really took that many times, for surely I thought that was a slight exaggeration. (After all, most people would have given up long before then!) Evidentially, recalling this is still painful, because he assured me that yes- he was told no by 39 people, until he found a citizen advocate in Lester Brown. Amazing!
This was a long post, but as I said- it took a while to digest everything I learned. After the Institute, I was one of the lucky folks who did not live far from the retreat center, and slowly made my way home. It was the first time I drove on ice, period, never mind since I became injured! (Can I mention again that I am Southern born and bred?) I safely made it home, and holed up watching movies, TV, and reading until my wonderful city thawed. I was very much over it, and was grateful when the roads were clear again, and I could get out and about!
I would like people to share with me their personal views of what community is. It is how we all learn from one another, and I am a firm believer in the healthy exchange of knowledge! What gifts do you have to share? Have you managed to establish a unique support system? Until next time….
Robin Wilson-Beattie
Reeve Foundation Ambassador
Robin Wilson Beattie, Reeve Foundation Ambassador introduces herself to the community.
I can not tell you how thrilled I was to say goodbye to 2010 and hello to 2011! There is something very liberating about being able to make a fresh start, and resolve to do tackle life in a positive and beneficial manner. I enjoy making a list every new year, and establish personal goals and aspirations for the upcoming months.
As a newly minted Christopher and Dana Reeve Foundation Ambassador, one of my 2011 resolutions was to write more. Allow me to introduce myself! I am Robin, and I live in Atlanta, GA. I’m the proud mother of one wondrous daughter, named Abigael. I am a deep fried Southern geeky girl, and I live a full and active life. I love laughing, reading, traveling, writing, camping, exploring my community, comics, sci-fi, learning, volunteering...and have a billion other eclectic, diverse interests and activities
I am also a person living with a spinal cord injury. In 2004, a rare congenital birth defect was found inside of my spinal cord. It was an intradural spinal arteriovenous malformation (AVM). My AVM was bleeding, causing all sorts of neurological problems. I had never heard of it, and being told I was dying from it was extremely frightening. When you throw in terms like “experimental surgery”, “extremely rare”, and have a hard time finding understandable information on the condition- the future can look uncertain and bleak. However, I was given a ray of hope. A week before the surgery, I found out I was pregnant with Abigael. While this bit of news did not make my surgical team the least bit happy, I was thrilled beyond belief! Life was definitely about to become unusual and different! (I will have to share a few entries from the journal I kept at the time, in order to give a more vivid depiction, at a later date.)
Fast forward to 2011. Abigael is now 6, and my injury is classified as C-4 quadriplegia incomplete. With the aid of a cane, I am able to walk short distances. I use a power chair for longer sojourns. People see me walking, and assume that I am physically capable of doing more- but they see me in my chair, and make the opposite assumption. In the beginning, I did not know how to discuss the anomalies of my SCI, and why I was able to perform some tasks, and not others. These days, I have no problem speaking up for my needs and capabilities. I now have a career path, teaching other people with disabilities how to advocate for themselves! In 2004, I never would have imagined I would be where I am today. Losing what I had in a physical sense caused me to gain so much more mentally and spiritually. Sometimes, I feel like once you face death- hell, you can face anything!
Today, I choose to look ahead. Much like making New Years resolutions, I have learned that I must focus on the present, and turn my eye towards the future. I may occasionally visit the past (like looking at my Abigael’s sweet baby pictures, and missing holding a sweet little infant in my arms!), but I can not waste precious energy living there. I hope to share glimpses and personal insights and experiences, as they relate to living with a spinal cord injury. I invite y’all to read, comment, and share bits of your own lives, as well. I’ll discuss everything from parenting, rejoining the world of work, advocating, socializing and participating in unique and fun activities. Here is to 2011- may it be the best year, yet!
Robin Wilson Beattie
As I mentioned in a previous posting, this past weekend was the
Keshet Dance Company’s performance of Nutcracker on the Rocks. The performance was absolutely amazing!
While watching this performance I was reminded of the wonderful stories which I heard about the late Dana Reeve who was always a great supporter of the arts.
In this version of the Nutcracker there were 5 performers who used wheelchairs and they brought the snow scene to life.
Congratulations to all of the performers at the
Keshet Dance Company for putting together and amazing show.
-Priti
NOTE:
Ruben Rios, a Reeve Foundation Ambassador, explains how he first started mouthpainting and became a Scholarshipholder with the Association of Mouth and Foot Painting Artists.
I was first introduced to the
Association of Mouth and Foot Painting Artists (AMFPA) back in 1992. One day, I was bored so I asked my mom to set up a makeshift easel on my bedside table. Using a ball point pen, and regular printing paper, I began to doodle simple drawings just as I had done throughout my childhood. Upon my next visit to the hospital, I shared these doodles with the occupational therapist. She asked if she could post copies of my doodles in the corridor display case outside of her office.
A few days later, I received a phone call. It was Robert Thome, Robert is a very talented and well known artist who is a Life Member of the AMFPA. He had seen the doodles, and thought they were very good. He told me all about the AMFPA which was founded over 50 years ago by Arnulf Steigman, the AMFPA boasts over 500 mouth and foot artists worldwide, today. In order to be accepted as a scholarship/student member, one must paint using only his/her mouth or feet, and submit a small body of work along with a letter stating his/her intention of becoming a professional artist. At first, I was skeptical as to the quality of work that could be produced by mouth. I didn't want people to JUST admire the work because it was painted with my mouth. I wanted my work to stand on its own merits. The last thing I wanted was to be patronized with gratuitous compliments.
Robert took me to some exhibits where I saw amazing works of art which had been created by other mouth artists. Thanks to Robert's guidance, and mentoring, I applied and was accepted in 1996. The AMFPA reproduces our work on greeting cards, calendars, and more and uses the proceeds from sales, to help mouth and foot artists become better artists through the scholarships it awards. There are three levels of membership, Scholarship, Associate and Life membership. The latter two levels provide financial independence for artists. The Christmas mailing of these greeting cards is the most popular. On the back of each greeting card, one can find information about the artist such as name, country of origin and whether the image was produced by foot or mouth. What a special way to mail your best wishes to loved ones. Not just a greeting card, but hopefully an inspirational keepsake that was painted uniquely by a person who is living with a physical limitation.
The AMFPA truly gave my life a purpose at a time when I had extremely limited career options. I am grateful to Robert Thome, the AMFPA, my mom and all of the people who have come before me, for showing me the way and helping me to get there. Likewise, I would like to thank every single person who has supported the AMFPA by getting on the mailing list to purchase these fine greeting cards throughout the years.
Ruben Rios
Hi,
Just wanted to share how getting involve in wheelchair sports after I suffer a Spinal Cord Injury has helped me move forward. I have been paralyze for 17 years now. I'm a T-12 complete paraplegic. When I first got hurt did not know how i was going to move forward with my life. I was 20 years old at that time. I did my Rehabilitation at Rancho Los Amigos National Rehabilitation Center in Downey, CA. I owe a lot to this facility because they open so many doors of opportunities for me and I have a better quality of life now. I got involved with their wheelchair sports program one year after my discharge. I was blown away when I came out to play wheelchair hockey. I was playing with people who had been injured longer then me and some who just gotten out of the hospital. I learned how to play wheelchair hockey, but also my wheelchairs skills just sky rocketed. I stop being afraid of falling out my chair because I had the confidence to get myself back up without any one assisting me. after this introduction to wheelchair sports I became involved in tennis, snow skiing, and my favoritt basketball. Through sports I have had the opportunity to meet people from all walks fo life and all sort of disabilities just living life to it's full potential. I could have chosen to give up a long time ago , but my will and desire to live life did not let me. One of the lesson I have learned on this journey is that my disability has not stop me from living life to its full potential. Try to find people who will lift you up when your down and become active in some sort of activities; sports, painting, volunteering to keep you moving forward. Thanks for allowing me to share.
