stillpoint

Accessibilty and Useability

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Patient Meditation Groups

Find out what's available in your area

Meditation instruction specifically tailored to the needs of those with chronic illness or pain are sometimes run by charity/voluntary sector organisations or NHS patient groups. In some cases, joint ventures between both sectors lead to local initiatives bringing meditation instruction to patients (see below). If you want to investigate whether such an initiative has been carried out (or is being considered) locally, try the appropriate self help groups and outpatient clinic for your health condition(s). Try to ensure someone logs your request, even if the answer is ‘no’, and state that you hope it would help you manage your health condition: in this way the growing interest in meditation is more likely to be taken into account by decision makers who develop services. Other useful sources of information include disability forums, local health centres and your local library.

Setting up a group - a case study

Simon Ounsley, a former committee member of the Leeds ME self help group, told us about a successful meditation class he helped to set up for their members. “Funding can be obtained in some cases from the Local Authority or Health Trust via a Joint Community fund”, he advised, adding, “probably the best way to find out is to contact the local umbrella organisation for voluntary groups, who can usually provide information on sources of funding.” As for the teacher, Ounsley made an arrangement with the local branch of the FWBO (Friends of the Western Buddhist Order) to be the group’s instructor. Some individuals prefer this to learning how to meditate at a mainstream course or retreat, as a class can be tailored and allows the instructor to focus on specific physical or mental difficulties related to symptoms, eg posture, concentration etc. It can be embarrassing to always be the only one in a group who’s ill or can’t sit for long periods due to pain. “You feel less self conscious when everyone in the room knows what its like to have mobility problems or pain,” says one participant of such a group. At the time of the Leeds course, Simon found that their teacher had ‘no problem with people lying down to meditate if they find sitting difficult, and problems with meditation were discussed at our last session.' Simon wants to make it clear that projects such as his are rare. Doing the organising yourself requires considerable energy for form filling, locating a venue, organising publicity; added to which you may need the back up of a willing committee or fellow members some personal interest in meditation.

What about those too ill to attend?

If you are too ill to attend a group, you could try an audio guided meditation -

see reviews of guided meditation tapes and CDs

Access & Support Guidelines

As this is quite a long article, you may wish to cut and paste into a Word (or similar) document and print it out.

Introduction

One aim of Stillpoint is to look at the needs of Buddhists and meditators isolated by illness, and especially how to maintain a connection to spiritual community and teachings. The needs of individuals cover a broad range. Some are house- or bed-bound, others can get out but struggle with mobility, pain, low energy. For some, illness, an accident, or the increasing infirmity of old age now place them on the outside of sanghas they were previously active within. At the other extreme are novices keen to learn meditation to help cope with a health crisis but struggling to reach a teacher. The aim here is to present examples of good practice where spiritual community becomes more accessible to such individuals.

Some Friends of Stillpoint have asked, ‘how can we include your users more?’ Here we compile examples of good practice in making spiritual community inclusive and accessible. The suggestions come from a) our own experience with a range of methods typical of the voluntary self-help sector, especially for connecting members who don’t physically meet; and b) users anecdotal reports of positive experiences within centres and communities.

The needs of those being cared for will vary greatly, from needing a lift to an event, to home visits for the housebound. We can transform the experience of people excluded from ‘normal’ social activity, as well as embrace care and service as intrinsic to socially engaged spiritual practice. In the process, we enrich the lives of everyone in the community. It’s worth noting that some practitioners will also be carers, whose support needs are also important. They can benefit indirectly from a more widespread awareness of the real implications of birth, old age, sickness and death on all our daily lives.

A note about resources.

We recognise that groups often operate on a shoestring and members are often busy people, without much spare time and energy. Often measures below have been carried out informally, by individuals in that community. Our hope is to offer ideas for such individuals who are keen to embrace care as part of their role in a sangha, but also to assist communities/centres who wish to introduce access & support measures more formally. Our users feedback suggests that the smallest gestures, such as being made to feel that its OK to ask for help, or certain needs being pre-empted by fellow practitioners in a group, can have enormous impact on our experience of shared practice.

One point should be stressed in this age of multimedia technology: just because it can be done using new technology, doesn’t mean it will actually be the best way. The ‘technology poor’ obviously include those unable to work, or prevented by disability from internet use, although carers can sometimes act as intermediaries. So some of the more ‘old fashioned’ methods are the most inclusive; however, they tend to also be the most energy- and cost- intensive. The list below starts with the measures that are most realistic for the average centre’s resources, and goes on examples of systems for those with more resources to put into outreach. If there are concerns about demand, ensure that limits are regularly re-assessed and communicated in advance, eg explaining if calls/visits can only be made for a specified duration (eg an hour) or frequency (eg monthly) and adhering to that arrangement.

Four types of help for users

1. Access & support within your centre
2. Providing clear information
3. Outreach support
4. Support & contact networks

1. Access and Support within your centre

The environmental conditions affecting accessibility, and organising care for centre users

1. Appoint a support contact or ‘carers group’ who can assist those with special needs. The most common difficulty reported is not knowing who to ask, and the energy and confidence required to keep asking for help. If the awareness of access and care issues is built into the organisational culture and responsible individuals appointed, this makes a huge difference. In the case of residential centres a carers’ team might operate in turns to ensure some back up support for visitors who require assistance. An example might be offering to collect meal trays for less mobile participants at the canteen, to avoid standing for long periods.
2. Help with transport. Share transport or offer lifts to meetings for those with mobility problems, or aid those who require it to arrange lifts or taxis to and from a venue.
3. Flexible opening hours/access. People with fluctuating energy levels may not manage evening meetings or take part in all day/residential events. Arranging out-of-hours access and/or wheelchair assistance could be their only chance to visit a shrine room or obtain advice.
4. Practical assistance. Individuals attending meetings who are infirm may be sensitive to cold or other environmental factors, unable to kneel or sit upright to meditate, or need to leave the room/ take breaks, so the offer of physical assistance may be welcome. At larger, residential or all-day events, the ideal would be providing a separate area for quiet/rest, and wheelchair hire and assistance.
5. Exemptions and timetable flexibility. Helpful examples reported include: a clearly stated exemption from housekeeping chores for those with illness; rest periods or flexibility regarding participation in timetabled activity; a clear written statement at a canteen that elderly or infirm participants need to ‘jump the queue’, at one retreat.
6. Flexibility regarding special dietary needs. It is increasingly common now for caterers to incorporate wheat and dairy free alternatives, but it is often not possible to cater for every individual need. Access to a kitchen to prepare special food outside normal meal times is helpful. Users have particularly commented on difficulty making arrangements to eat fish or meat, due to lack of awareness that vegetarians can find they need to resume fish or meat eating, or raise their protein levels, during chronic illness.

2. Disabled access: providing clear information

1. Disabled people and those with chronic illness are not a single group with uniform needs. This does present challenges in terms of the need to be thorough, flexible, and available for enquiries regarding the environmental conditions of the centre and events. Users with extra needs will be less likely to visit if they cannot obtain clear information in advance, either from written information, or by telephone. It is not enough to simply state that an event or location is ‘disabled accessible’ if it has not been investigated, with a range of needs and disabilities in mind.
2. Consult with members of your community with disabilities, those who have experienced chronic illness and carers, and invite them to play an active role in making decisions about the centre’s management, and the environmental conditions or timetabling of events.
3. Don’t be afraid to ask new enquirers the ways in which their illness or disability affects them or what their needs are. Be prepared to explain over the phone the precise details of the terrain, location, wheelchair access, seating availability, stairs, hearing aid loop, approximate distances to walk from car park/street, etc. If you don’t know, see it as an opportunity to learn and improve the written information your centre currently provides.
4. A contact person or central information point where notes are made will enable more consistency in answering questions on access. Set down in writing the areas where improvement can be made. Evaluate feedback from previous events or courses, respond to previous problems that have arisen and issues that prevent some users from attending.

3. Outreach support

1. Appoint a support contact responsible for ensuring those members who are unable to attend meetings remain connected to the sangha.
2. Teachings and print/audio resources. Provide flexible means of access to your group/centre tape library or book shop, eg. delivery by hand or by post for those unable to visit in person.
3. Postal or email correspondence. Send an occasional note or card to show those who have become unable to attend meetings and are socially isolated that they are not forgotten.
4. Date of Birth records, if kept alongside members’ contact details when joining your group, provide an opportunity to send birthday cards to those who are housebound. Isolated members are often profoundly affected by being remembered by such gestures. A step further - postal celebratory cards for other events on the calendar, Buddhist (Wesak or Chinese/Tibetan new year) or otherwise (New year, Christmas).
5. Home visits. Face to face contact is extremely valuable to the housebound especially if living alone. This can involve anything from an occasional 'social' visit, to discussion, spiritual guidance, or sitting meditation in the home.
6. Telephone support. Contact by telephone can be a valuable way to make someone feel included when they have not attended meetings or meditated with others for a long time. With some fatigue related conditions, talking at length is difficult and exhausting. A few moments’ silence can also be shared on the telephone, though we often forget this!
7. ‘Virtual’ shared meditation - set a time or remember the isolated members during a meeting, and invite them to meditate where they are at the specified time slot, light a candle, etc
8. Email announcement lists mean those who cannot come to physical meeting place can feel included in a community. Advantages and disadvantages. Reach a wider audience, combine all members into one, yet a the same time you divide again technology poor.

4. Support groups

The following methods are the most time-intensive and require a committed administrator, but are extremely effective in bringing together individuals who are totally confined to their homes, and creating communities that, although they do not physically meet, offer motivation and support that is usually lost with the loss of social contact.

• Contact network. This helps friendships develop among isolated community members. A few lines about each person are gathered on a form and listed with their contact and chosen form of communication - phone, email or mail. A coordinator needs to type the details or, easier still if submitted via email they are pasted onto the document, edited if necessary. Guidelines can be given for security/ confidentiality. If data protection or safety is a concern, some systems allow for complete confidentiality, eg a central person storing the actual data, circulating names and interests, and members simply sending an SAE to be matched with like-minded people.
• Round robin cassettes are a simple way for very isolated and ill people to ‘talk’ to each other and get to know each other without having to use the phone or leave the house. Themes can be relating to meditation or spiritual practice, updating on events attended by other members, or more general chat. This has been successful in ME networks where users find telephoning difficult due to unpredictable energy or their ‘good’ phases failing to coincide with ‘normal’ telephoning hours. Here’s how it works: one person collects addresses and buys two cassettes, and starts it off, posting it in a padded envelope with a list of addresses, so that each individual who receives it listens to the taped message, adds their own and sends it on to the next person. The geographical distance in this case is not an issue.

These guidelines were compiled by Joelle Marlow, and are copyright of Stillpoint; but may be freely copied for the purposes for which it was created: to improve access and support for isolated Buddhists and meditators.