I would like to echo some of Rob’s points. I suffer from chronic pain as well as live with fatigue that increases throughout the day. On a typical day, I am in bed by 7:00 p.m.. Although I have tried to “voice” these “scheduleing” issues within our sangha—there has been no change in scheduling. In Indiana we also face a geographic challenge as our sangha is split between Bloomington and Indianapolis . Cities which are over an hour away from each other. My chronic pain prohibits me from going up and back to Bloomington for a day long activity. Our activities in Indianapolis typically begin after 7:00 p.m. While one individual has counseled me to limit my volunteer time, that is the extent of the accommodation. My requests that we arrange to do the Shambhala Sadhana via Skype have fallen on deaf ears. I came back from ESA this summer all fired up about Shambhala. Thein I participated in a day long organizational meeting that was draining for me as extended over a full day. It was more draining as it seemed like my “ideas” were ignored. I feel like people expect me to organize activities so that I can participate without realizing that, simply organizing those activities, would sideline me for a week afterwards.
As a result of this, I elected to put my local Shambhala participation on hold and stop my modest donations to Shambhala. I am hanging on to my Shambhala mentor, who lives out of the area. I value her support with my practice. I do participate in the Shambhala online activities and really enjoy tand am very grateful for the online Shambhala Sadhana held every other month. I have basically suspended taking further steps on the Shambhala path and have enrolled in a 2 1/2 year program at Spirit Rock entitled the “Heavenly Messengers” program which deals directly with aging, chronic pain, and dying. I have a dharma teacher through that program and a dharma buddy. I also teach meditation at an alternative high school as part of my commitment to building an enlightened society.
In short, although I find the Shambhala teachings to be powerful and enriching, I have found that participating in the Shamhala sangha on the local level to be very difficult. I can understand why the sangha does not want to take into consideration one person’s disability on one level, however it is amazing to me the extent to which they will go to accommodate dietary restrictions. I also understand that individuals who are in position of leadership often feel drained and exhausted just performing that role without renumeration.
However the pain and exhaustion that I feel on a daily basis is not simply that I feel “tired.” It is a feeling that doesn’t leave with a good night’s sleep. As a result, when one has chronic pain, it is important to participate in activities that are energy enriching, rather than energy draining. Because it is energy draining for me to participate in Shambhala on the local level, I have decided to keep my toe in the Shambhala water through Shambhala online, but my heart lies with the “heavenly messengers’ program at Spirit Rock. I don’t think that we need more guidelines or articles. I think that all center directors and coordinators should participate in an online training on disability awareness as a prerequisite to assuming a leadership position. The information is out there, but more people need to “hear it.” It could be as simple as a group skpe call on the regional levels with a moderator and where individuals with disabilities speak about their experience with the Shambhala sangha. Then the center directors and coordinators would “hear” in a group what the problem is and figure out ways to address it within their individual sanghas…The solution needs to come from the bottom up and be motivated, not from some top-line directive, but rather from the caring, compassionate hearts of the individuals in front-line leadership positions. Perhaps this evolution in practices could be documented in the Shambhala times so that each change, might spark another sangha to look at their own practices to see what could be done.

Oh and also I must add that to get to our center there is a flight of stairs and that is the only way up.

Hello, I can relate to this so much. I too have fibromyalgia and struggle greatly with going to the center. I actually choose to sit on the floor because the chairs are small wooden and hard and those are my only choices. I have not been back for awhile because the last time i meditated their from 9am to 2pm even with breaks and walking meditation i was in bed for two days after. then the last time i was there i left for uncomfortableness of the chair. I mentioned this to somebody there and he told me that maybe i should start a chronic pain meditation group myself but i dont believe he meant do it there. there was no other thing said about a solution and i was kind of taken back by the lack of compassion. It’s unfortunate I cannot do more classes and weekends now that I am getting worse. This really should be addressed with all of the centers. Thank you.

Dear Rob

Further to Stefan’s response, I was the chair of the Accessibility and Disability Working Group for the six years before Stefan and for some reason I too never received any of your letters or emails; I am not sure what happened there.

As you can see from Stefan’s response lot is being done to keep improving accessibility in Shambhala both by the Working Group and individual centers; In addition to what Stefan mentioned if you search the Shambhala Times for “accessibility”, “disability” or “captioning” you will find quite a few related articles, that might be of interest to you, including:

The article by Mary Whetsell “Community: Lose the Lids!” at http://shambhalatimes.org/2013/01/14/community-lose-the-lids/ where amongst other things she mentions the video “Accessibility and Disability and the Shambhala Path” at http://www.youtube.com/watch?v=TMmbzw0GYoU&list=PLJGWhUArPrVJPiwqz8ktPC5ka_TY-9C9a&index=1 by then Shastri, now Acharya Dan Hessey

“Making Shambhala Accessible” at http://shambhalatimes.org/2009/05/25/making-shambhala-accessible/

“Opening Doors for Shambhalians Living with Disabilities” at http://shambhalatimes.org/2009/05/28/opening-doors/

“Ever-Expanding Accessibility” at http://shambhalatimes.org/2010/07/21/ever-expanding-accessibility/

“First Annual Report on Accessibility and Disability” at http://shambhalatimes.org/2009/05/05/report-on-accessibility-and-disability/

“Nourishing the Third Jewel: A Letter from our Guest Editors” at http://shambhalatimes.org/2009/05/31/nourishing-the-third-jewel-letter-from-guest-editors/

“All Ages and Abilities Have a Home in Shambhala!” at http://shambhalatimes.org/2012/07/17/all-ages-and-abilities-have-a-home-in-shambhala/

And for people who are deaf or hearing impaired you could see the articles about closed captioning the teachings, such as:
“Online Multilingual Video Captioning Project Underway” at http://shambhalatimes.org/2010/07/24/online-multilingual-video-captioning-project-underway/

“Speaking all of Shambhala’s Many Languages” at http://shambhalatimes.org/2010/08/23/speaking-all-of-shambhalas-many-languages/

“Multi language Captioning of Teaching Videos Continues with the ‘Sakyong Mipham Rinpoche en español’ YouTube Channel” at http://shambhalatimes.org/2011/06/08/the-captioning-of-teaching-videos-continues-with-the-sakyong-mipham-rinpoche-en-espanol/

“Going Viral with Basic Goodness: Shambhala YouTube” at http://shambhalatimes.org/2011/11/03/going-viral-with-basic-goodness/

“Closed captions and translations of videos for the 25th Anniversary of the Parinirvana” at http://shambhalatimes.org/2012/04/04/closed-captions-and-translations-of-videos-for-the-25th-anniversary-of-the-parinirvana/

“Shambhala 2011 The Year in Review movie closed captioned in eight languages” at http://shambhalatimes.org/2012/02/28/shambhala-2012-year-in-review-movie-closed-captioned-in-eight-languages-2/

“Two Minutes of Basic Goodness” at http://shambhalatimes.org/2012/11/05/two-minutes-of-basic-goodness/

“Update on closed captioned Shambhala YouTube channels, translations and translators” at http://shambhalatimes.org/2012/11/01/update-on-closed-captioned-shambhala-youtube-channels-translations-and-translators/

Dear Rob,

I’m responding to your posting as the chair of the accessibility and disability working group, whish has been in existence since 2005. The Accessibility and disability working group is a part of Kalapa Executive for Societal Health & Well-being and consists of about 5 to 10 volunteers who work on specific issues of physical and liturgical accessibility in centres and web and electronic media accessibility. I think the main problem here is not a commitment to accessibility but making this commitment itself more available to the sangha. I will try and address each of your concerns here:

A woman arrived in a wheelchair and it was quickly realized that she had no wheelchair access to her
dorm room. She also had a hard time navigating between rooms in the main building because the
bottom of the door frames were too big. People quickly started trying to correct the problems but why
had no body thought of this before?

The situation you describe sounds uncomfortably familiar. The accessibility and disability working group has been working on a ‘land centre accessibility’ project since 2005.. Unfortunately these issues, in the context of other more short term and urgent needs, have not been fully addressed. Our current group, in a ‘land centre accessibility’ project is working on doing analysis of each of the centres (SMC, KCL, DDL, DCL). Our plan is, beyond producing studies that delineate the problems in detail, is to produce a workable agreement between the administration of the centre and the working group with specific goals (e.g. completed accessibility goal and the date when they commit themselves to do it) and accessibility improvements that takes into account the financial and resource constraints particular to each centre. This is intended to take the accessibility issue beyond just delivering a set of requirements to the administration and expecting them to sort out the implementation. So, in response to:

why had no body thought of this before?

Is that there has been a great deal of thought and some improvement, and an acknowledgement of much that is needed to be done.

Further than that, the working group, in its checklists for disability accomodation, which are soon to be published, is promoting the practice of including the collection of special needs for accessibility as part of the program registration process; not unlike quesiton about needing vegetarian meals which currently part of them.

Disability access is a lot more than wheelchair access or services for the visually or hearing impaired. I
learned this when I developed fibromyalgia. Disability is just a name. I use it as a convenient way to
explain how some people move and interact with the world in a way that is different from most people.
There are many types of disability and the barriers to Shambhala programs are varied. I can explain how
my disability affects my ability to access Shambhala programs. I have chronic pain and fatigue which
peaks in the evenings. This makes any evening Shambhala courses prohibitive for me. Almost all
Shambhala courses are in the evening. Shambhala levels are set up as weekend programs, which
because of the long hours of sitting are just too painful for me to endure. I have tried weekend programs
several times and they are just too much. I know I am not alone in this

Your experience of suffering fibromyalgia illustrates the difficulty of relating to ‘hidden disabilities’. Our intial efforts have been focused on the ‘big 3’: visual, auditory and mobility disabilities. However in the last couple of months we have been producing the three documents (introduction to a disability, checklist for a disability and resources for that disability) for hidden disabilities – cognitive, psychiatric and sensory (allergies to smell)/systemic disabilities. While your situation is somewhat unique, it may be that the Shambhala on-line offerings could, in a small way, replace the classes, whose structure find difficult. There are also programs in practice centres that may be more appropriate to your needs and abilities, this may especially appropriate for the Shambhala levels.

I have written a number of emails and letters to the Shambhala leadership over the past 2 years. I have
heard nothing substantial back. I had one email reply that they would get back to me. Why the lack of
interest? Am I not describing what this means very well or how this affects the disabled? How do I make
my message more clear? Or do Shambhalians not care? I wonder if people really understand what it’s
like to arrive at a program and find you can’t get around or participate fully. Can you image what that
woman in the wheelchair felt like? In a word: unwelcome. I mean come on guys, we talk about
enlightened society, compassion, openness, loving kindness and we can’t deal with this? It is really not
that hard

I have been the chair of this working group for the last year and a half and have not seen email from you; again it seems like not so much of a problem with not caring, but of linking up. Issues of feeling unwelcome and disregarded should be taken to the administration of the centre and if you don’t get a satisfactory answer you can write to us ([email protected]) and I will help you getting your message to the right people. I am personally sorry that you feel excluded because of your condition and use incidents like this as motivation to try harder and more effectively to make accessibility a key part of Shambhala’s goals.

In the Vision,
Stefan Carmien

Some usefull links:
http://www.shambhala.org/community/da.php
http://shambhalanetwork.org/groups/accessibility-and-disability/forum/