Half Access: making live music venues more accessible and affordable

No, wheelchair crowd surfing doesn’t qualify a venue as accessible.

How many of you have made it to a concert venue only to be surprised by the facility’s lack of accessibility? Well, there’s a grassroots effort to collect and share information about such facilities, thanks to the non-profit organization called Half Access.

Half Access is dedicated to making live music accessible. Their user-generated database provides accessibility info on venues to help prepare disabled folks on what to expect before arriving at a show, and will be used by them to work with venues on improving accessibility in their spaces. You can help by going to their site and joining their newsletter or Facebook page and start contributing with your experiences at venues you’ve been to.

SCI-FIT opens new exercise-based therapy center in Clovis

The new location will soon be fully-furnished with the latest exercise and therapy equipment.

Addressing a growing demand in Fresno County and beyond, SCI-FIT opened to public its third exercise-based therapy center in Clovis. The new center, located at 555 N. Halifax, Suite 101, has started accepting clients with neurological injuries or disorders, including spinal cord injury, stroke, and MS just to name a few.

More exercise equipment is arriving weekly, including the Lokomat Robotic Gait Training machine slated to be installed soon. To see if you would qualify for their programs, complete their online application HERE.

Owner Dan Dumas has promised that there will be an official grand opening event in the coming weeks but for now, they’re open for business and enrolling clients.

SEARCH FOR SCI CURE: axon regeneration, the Holy Grail of a cure?

We know that your head starts spinning as soon as another possible cure for spinal cord injury story is published but rest assured, this particular one comes from someone that we have a lot of confidence in. Meet Kate Willette, author and a contributor to New Mobility magazine. It also helps she has personal experience with SCI as her husband is a C6 Quadriplegic.

Her latest column dives into the promising results involving axon regeneration. Axons are the gossamer threads that project out from neuron cell bodies in the brain; they carry your thoughts (brain signals) through the cord to other neurons and eventually on to your muscles. Broken axons are why people stay paralyzed. The conventional wisdom is that once damaged, they can’t regenerate.

We’d also like to remind you that Kate’s book, “Don't Call It A Miracle: The Movement To Cure Spinal Cord Injury” is available free through the Reeve Foundation. This 238-page book explains the basic biology of the injured cord, what the basic approaches the scientists are taking to heal, mend or bypass the nervous system and what you, as a non-scientist, can do to speed things along. To get your copy, CLICK HERE.

SCI Artist-Innovator Fund seeks submissions for $7,500 grants

The spinal cord injury (SCI) community is abundant with out-of-the-box thinkers, hackers, problem solvers, and individuals creatively tackling challenges and we were thrilled to see the Center for Cultural Innovation (CCI) launch its first-ever SCI Artist-Innovator Fund to offer artists, innovators, inventors, makers, and entrepreneurs financial capital for social-impact oriented, creative entrepreneurship projects.

Recent statistics show that self-employment rates in the US are higher among disabled people than non-disabled people. However, there is limited funding dedicated to developing entrepreneurial capabilities of disabled artists that would provide pathways for financial independence. In addition, these programs assume that disabled people are driven to become entrepreneurs primarily as a result of barriers in other sections of the workforce. CCI challenges these assumptions and recognizes that the spinal cord injury (SCI) experience brings a unique perspective to innovation.

The SCI Artist-Innovator Grant will offer 10-12 grants of up to $7,500, for a total of $75,000 in grants, to individual artist-entrepreneurs with SCI who are inspired to innovate by opportunity-based entrepreneurship – in other words, by the possibilities and benefits that are offered through the experience of pursuing a creative practice and living with SCI. CCI recognizes that having an underserved perspective, living with challenging circumstances, and applying creative practice can yield important solutions for not only the innovator but for the benefit of society.

To be eligible for consideration, applicants must:

1. Be an individual living with spinal cord injury (SCI applicants may be part of a team, but only if the applicant is the primary owner or lead);

2. Live and work in the U.S. or its territories; and

3. Self-define as an artist, maker, creative, or culture bearer, or whose project reflects deep and sustained refining that reflects a craft, cultural, or artistic practice

Deadline is Wed., June 12, 2019 at Noon PST. For more information, CLICK HERE.

NorCal SCI to present at Napa SCI Network's Feb. 22 meeting

NorCal SCI co-founder, Nick Struthers, will be making his way up to Napa this Friday to meet with the Napa Spinal Cord Injury Network as part of their monthly meetings, learn about their work and familiarize them with the services and programs we’re offering that members of the SCI community in Napa Valley may also benefit from.

The group’s leader, Jim Burnett, was kind enough to invite us over and to all those living in Napa County, we invite you to come to the Community Outreach Center located at 3448 Villa Lane, Suite 102, Napa, and meet with Nick. The meeting runs from 1-2 p.m. The only question that remains unanswered is whether Nick, a self-proclaimed wine connoisseur, will come home after being in Wine Country though he has promised to file a report of his visit for next week’s newsletter.

Do/can people with disabilities have/enjoy sex? YES!

We happen to know from the hits to our web site that any time we feature an article dealing with sexuality/intimacy, it gets a lot of attention … and it should. For the vast majority of persons with spinal cord injury, this is one frustrating puzzle to solve and sometimes, there’ are not many solutions. But don’t give up as we have a few resources to introduce you to that could help in that department.

SEXUALITY AFTER SCI — This video archive and website is a resource for people living with spinal cord injury, their partners, and the healthcare professionals who treat them. Their goal was to create a platform that provides the knowledge and practical information needed to encourage communication and instill hope that love, sex and intimacy are all possible after spinal cord injury. They have developed 16 videos addressing the following topics:

• Adaptive Devices

• Communication

• Confidence and Self Esteem

• Dating After SCI

• Debunking Sexual Myths

• Effects of SCI on Sex

• Erections

• Facilitated Sex

• Fertility

• Managing Bodily Functions

• Positioning with Partners

• Pre-Injury Factors

• Redefining Sex

• Sex Life and Well Being

• Talking to Your Doctor

• The Big O

This article appeared on Vice.com and includes interviews with several persons with a disability and how they have maneuvered some of the physical challenges they encounter when trying to become intimate and have intercourse.

My Boyfriend Is Quadriplegic and We're Trying to Have Sex
This Q&A appeared on a web site which posed the challenge of having intercourse with a high-level spinal cord injury male.

FOR WOMEN: Dating, Intimacy and Sex Positions — Atlanta’s Shepherd Center has a repository of videos including three on these topics. Unfortunately, there appears to be a decidedly smaller inventory of content focused on females and their sexual challenges than males.

Wheelchair basketball tournament coming to San Jose Feb. 23-24

The City of San Jose Parks & Recreation Dept. will be hosting the 11th Annual California Classic Wheelchair Basketball Tournament Feb. 23-24 at the Bascom Community Center at 1000 S. Bascom Ave. San Jose.

The two-day free event runs from 9 a.m. to 6 p.m. and features players 13 years and older. For more information, you may contact Charmaine Guerrero at (408) 794-6290.

Additional SCI research funding bill needs your support … NOW!

There’s new momentum behind re-authorizing California’s Roman Reed Spinal Cord Injury Research Act which was first enacted into law in 1999 and raised $15 million in California funding and attracted more than $80 million from other sources. That funding ran out some time ago and now there is news that California’s Assembly Bill 214 will provide $5 million in spinal cord injury research and numerous forms of paralysis but not without support from the SCI community..

Roman Reed

Don Reed is the father of Roman Reed and is leading the public outreach for this initiative and he’s requesting that you simply send him an e-mail at diverdonreed@pacbell.net with the following:

“I (state your name and/or organization) support Assembly Bill 214: the renewal of funding for the Roman Reed Spinal Cord Injury Research Act.” 
You can add more if you want, but that is what the legislative aide (the person who will read it) is looking for. If you or someone you love is affected by paralysis from any cause, be sure to mention that.

Please, time is of the essence and the more letters, the louder our voice becomes. To find the ultimate cure, more resources are required and this funding would go a long way to attract those additional resources.

NorCal SCI co-founders make their first ever visit to Modesto

NorCal SCI co-founders, Nick & Franklin, made their way to Modesto last week with the goal of meeting with a group of residents of Central Valley with SCI as well as meeting the staff at the Disability Resource Agency for Independent Living (DRAIL) and by all accounts, mission accomplished.

NorCal SCI co-founders, Nick and Franklin, were joined for lunch by several members of the SCI community in Central Valley.

The visit and conversations we had were yet another sobering reminder of the lack of medical professionals with experience working with individuals with SCI just a mere 90 miles away from Silicon Valley.  We learned this as we had organized a pizza lunch and invited anyone with SCI to join us.  Each person expressed their frustration of having to travel to Sacramento or the Bay Area to seek medical expertise in SCI. 

Another issue we learned about was the lack of socialization within the SCI community.  In fact, it was funny that three of the attendees lived in Ceres (a small community just outside of Modesto), yet they had never met each other.  No one was aware of any recreational or sports activities for wheelchair users taking place in that region.  The lower cost of living in Central Valley will continue to draw more and more people and that would include members of the disability community.  So, these challenges will simply become larger.

After saying goodbye to that group, we headed over to the offices of DRAIL. We were due to meet with Executive Director, Barry Smith, and Coordinator of their Stockton office, Alex Queen.  Barry ended up getting snowed in as he lives in Sonora which is about 45 miles from Modesto but also at an elevation of about 1,700 feet and with the storms passing through, they got a healthy dose of snow even at such low elevation. 

FRONT ROW (L to R), Nick and Franklin. BACK ROW (L to R) Alex and Jorge from DRAIL.

We had three goals from our visit to DRAIL.  One was to learn about the programs and services they offer. Next, we wanted to share what NorCal SCI offers.  And finally, we had identified last year the Central Valley region as the site of a Mobile Clinic in 2019 that we would host and we wanted to find out if the offices of DRAIL would be suitable for such an initiative and if DRAIL would be willing to allow us use their facility.  The offices are perfect for our purpose and we now need to learn if they would be willing to allow the use of their office, pending a discussion with Barry.

We ended up spending a good amount of time with Alex who shared a lot of information about their programs and services with us and we’ll be sure to highlight them next week.  Later on though, Jorge Pimentel, DRAIL’s Assistive Technology Advocate at the Modesto branch, also joined us for a discussion about AT devices and usage.  Nick was able to demonstrate one of our up and coming initiatives involving the use of Home devices to create more functionality and independence for those with a physical disability and we think Alex and Jorge were left quite impressed. 

Our goal was not to show off our capabilities.  Our overarching goal is to expand the use and understanding of how technology can help us become more independent and in the coming weeks, we will be unveiling our plans to help advance that cause throughout the SCI community.    

We’re grateful to Alex and Jorge for the 2 ½ hours they provided us with and we thoroughly enjoyed learning about the many services DRAIL offers through its four offices.

Accessible Travel Club on Facebook, a great forum for wheelchair users interested in travelling

Srin Madipalli enjoying a visit to Sydney, Australia

Our friend, Srin Madipalli, launched the Accessible Travel Club group on Facebook this past summer and has attracted a growing audience of over 6,300 members thus far. A Spinal Muscular Atrophy survivor and wheelchair user, Srin has always been an avid traveler and has not allowed his disability to restrict his thirst for adventure and with this group, he seeks to galvanize other travelers with disabilities to share their knowledge and experience of travelling.

Srin has been to many European countries, Southern Africa, India, Australia, Brazil, Japan, Hong Kong, Singapore and Indonesia. He now works at Airbnb where he has led a team to help making travelling more accessible.

Members of the Facebook group often share pictures of their travels which are helpful to better visualize accommodations. Srin invites you to join the group and help the disability community become more knowledgeable and comfortable about the many travel options available to them.