Disability Assistance at Workshops

Marsha Saxton 
International Liberation Reference Person for Disabled Persons

Many people with the need for disability and health-related assistance attend RC weekend workshops. This may include people who use wheelchairs or other mobility devices, such as crutches or walkers; people who have visual or hearing impairments; or people with recent or chronic illnesses or injuries. The RC Community has responded with different approaches, including “accessibility committees” made up of several people who either provide or support the assistance on-site at the workshop. This article will explore some of these approaches and offer ideas for how to make assistance work well for all involved. It is directed at both people offering help and people receiving help—which, of course, is all of us. Several beloveds contributed to this article. Many thanks to them for their experience, great ideas, and helpful editing.

Needs for assistance vary greatly among individual people. The population of “people with disabilities” is diverse. Disabled people can have a variety of different ways of moving, communicating, learning, and handling basic needs. A wide range of health-related issues may result in fatigue, chemical sensitivities, allergies, or the need for respirators or other devices, treatments, or interventions. Having my own disabilities and being familiar with the disabled population because of my work, I find disabled people to be wonderfully creative about living fully, with unique ideas to offer about being human. We want to know and include these people, and, of course, they may include you—now or at some point.

Here are some common examples of assistance needed at workshops:

• bringing people’s belongings into the site and setting up sleeping areas

• getting people’s meals

• helping people move around the workshop

• marking paths of travel in the main room with masking tape or signs

• setting up and monitoring assistive listening devices

• typing into a laptop computer to enable people to read in text on a big screen what is being said in the group

• reserving chairs for visually- or hearing-impaired people or those who need particular kinds of seating

• helping people identify Co-Counselors when session choices are made in the group.

More extensive and intimate assistance may include helping an individual get out of bed, take a shower, or get dressed.

Two people with similar looking or similarly labeled disabilities may require different approaches—because everyone is different, plus we are thinking about people’s choices and re-emergence as well as their access and assistance needs.

The experience of disability is different in different cultures. My comments here apply mostly to people in Western societies. I would be delighted to hear ideas from people in countries around the world about including people with disabilities in RC workshops.

A common confusion resulting from disability oppression is that people must learn a lot of technical or factual information in order to help or accommodate people with disabilities. Having “lots of technical information” is viewed as “the answer,” as well as something overwhelmingly complex and daunting. (Many people react to extensive guide books and checklists about access by being overwhelmed and not reading or following them.)

Articles about disability awareness and lists showing the range of needs can get us started. However, “how to accommodate these categories of disability” guides aren’t sufficient to keep us thinking and acting flexibly and accurately about the individuals involved, the particular workshop sites, and the resources of the particular leaders, workshops, and associated Communities. As mentioned, people with disabilities have unique, individual needs and abilities and won’t ever fit into a “type.” Part of meeting disability needs is technical, but mostly we need to be able to think flexibly, pay attention to the specific needs, and communicate well with everyone involved. We need to draw on our inherent human ability to thoughtfully and enjoyably help each other. I believe that the key components of effective helping are good communication, encouraging people with disabilities to be proactive about their help, and persistent discharge about confusions. Here are several things to hold in mind in order to make this go well:

1. The Goal of Accommodation at Workshops

The goal of providing disability assistance at workshops is to help people with needs for assistance to participate as fully as possible, so that they will benefit from the workshop and everyone else will benefit from their participation. Providing accommodation is not doing a favor for the disabled people. It is allowing everyone to benefit from everyone’s full participation. Also, accommodating disabled people is a contradiction to distress for everyone, because anyone could become disabled at any point. Including everyone contradicts all of our distresses about being left out.

2. The “Problem” of Disability

Through the distorting lens of disability oppression, the needs of disabled people are viewed as a “problem” that must be solved with effort, increased costs, restructured buildings, and time taken away from the people who are required to provide help. Sometimes the disabled people themselves are regarded as “the problem.” This is the oppression! The “problem” is actually the confusion that stems from centuries-old wrong assumptions about disability and needs. Clearer models of disability point out that an environment full of architectural barriers and oppressive attitudes is what limits the participation of disabled people.

3. Feelings About Disability

Disabled people, and disability, can be restimulating to people unfamiliar with them. Disability oppression is widespread; we’ve all gotten thoroughly confused by it. It is built on all of our early experiences of having small young bodies and being forced to conform to an irrational adult world. We were also given wrong information about who disabled people are and the “burden” or trouble they cause. Stereotypes of disabled people being heroic or courageous are equally alienating.

Feelings about disability may make some people uncomfortable about helping a disabled person. Disabled people have been nervously told by someone assigned to help them, “I’ve never met a disabled person before!” That’s a funny[1] way to say, “Nice to meet you,” but it is quite common.

4. Workshop Feelings

In RC we like to think that we are kind, loving, thoughtful, generous, and flexible, but sometimes being at a workshop restimulates old feelings. Each of us is being challenged to interact with many, many people, as both counselor and client, and to have many “jobs.” We want to be helpful and to do our jobs well, and this is what usually happens with disability assistance. However, people assigned to disability assistance jobs can also get distracted, be in a hurry, or feel resentful, confused, or embarrassed about the helping role and forget to do it well. This is a big concern of many disabled people I’ve spoken with.

5. Help

Helping others or directing others to help us, in the way that they or we want to be helped, can be a challenge. Everyone needs help, and we’ve all been hurt in the area. Few of us are able to freely ask for the help that we need and deserve.

Our main model of helping others is mothers helping children. Other models include nurse and patient, social worker and client, teacher and student. All of these involve a power dynamic between the helper and the person being helped. (Newer models of disability assistance give control to the person with the disability.)

Sometimes “over-helpfulness” can become annoying, or oppressive, or even comically interfering. Some helpers try to rush to meet every need and to protect the person needing assistance from ever feeling bad—a kind of “caregiving” that isn’t empowering. In RC we want the person needing assistance to be in charge of his or her help.

6. Needs

Everyone has needs. Our ordinary needs are typically accommodated in ways we don’t recognize anymore, because we’ve gotten so used to them, they are just “there.” Examples include the facilities themselves, the chairs provided by the facilities so that we don’t have to bring our own, the lights in the buildings, the food served, the beds, the plumbing—all the myriad resources we’ve come to expect will be available. “Special needs” are usually regarded as such because of the widespread exclusion of people with disabilities. The expense of including disabled people is distorted: if we hadn’t excluded them from buildings and programs from the beginning, the “extra costs” wouldn’t exist. Correcting the exclusion only appears “expensive” because of past mistakes. Keeping disabled people out (of the Community, employment, schools, and so on) is what is truly expensive.

Our isolation recordings usually make all of us ask for too little. Or sometimes we have “frozen needs”—old recordings of needs (for attention, closeness, safety, food) that were unmet earlier in our  lives and that we want others to now meet. As we know from basic RC theory, frozen needs cannot be met; they must be discharged. Although it is rare in my experience, sometimes people ask for assistance as a way to avoid feeling alone, or helpless, or upset. Sometimes requests for assistance are requests for a session.

In providing assistance, how do we know the difference between real and frozen needs? Since most people with disabilities typically ask for too little help, I usually assume they are asking for help for good reasons. We have to think clearly about the person asking. It may sometimes make sense to say no and encourage discharge and re-evaluation of the request. This may seem scary or mean. We have to keep thinking and be willing to boldly be counselor.

Some people may be new to physical limitations and unsure of their needs at a workshop. It takes a while for newly disabled people to learn how to identify and describe their needs, travel with a disability, and direct people to help them.

In RC we are confronted with meeting real and sometimes intimate needs in a relationship that usually doesn’t include this because of the nature of Co-Counseling and the no-socializing policy.[2] We are crossing a boundary in the Co-Counseling relationship, and it’s not surprising we get confused.

7. The Site and Pace

Workshop sites are often very different environments from home. Because in RC we are trying to keep costs down, the sites may be old summer camps or retreat centers designed for “roughing it.”[3] They may not be consistent with the architectural building codes for wheelchair users or may be too dusty, moldy, or smelly for people with allergies or chemical sensitivities. There may be inadequate lighting for people with visual impairments or noise levels inappropriate for people with hearing impairments. People needing assistance may not have seen the site before and thus may be unable to determine their needs until they get there. The organizer may be unfamiliar with disability access and unable to describe the site well. Disabled people who manage independently or with minimal assistance at home may need more help than usual at the site because it’s not set up for their needs.

If sites are not wheelchair accessible—with level entrances, bathrooms with wide-enough stall doors, and other important features—that should be stated on the flier. Disabled people shouldn’t have to call to inquire. Putting access information on the flier is required in the RC Guidelines.[4]

People should not be carried up stairs; this is unsafe for both the disabled people and the people lifting. Rented portable ramps may work for events in people’s homes. Some RCers have built ramps into their homes to enable people with disabilities to attend RC classes. We need to work toward finding wheelchair accessible workshop sites.

Some sites are dusty, moldy, or newly painted, or have new rugs, and thus contain allergens that can trigger reactions. Sometimes it’s hard to tell[5] whether a site will cause such reactions, and people with allergies may or may not require on-site assistance. Good communication with people requesting allergen-free sites will help clarify their needs and whether they are workable. (This issue is discussed in-depth in the article “Environmental Illness” in the RC journal Well-Being No. 6.)

The workshop format and pace may affect disability assistance. Classes, meetings, playtimes, and meals may take place in different locations, every hour or two throughout the day until late at night. This may leave limited and unpredictable time to focus on physical needs. Planning well helps, but sometimes decisions must be made on the spot.[6]

8. Language

The words we use to describe helping and needs are fraught with disability oppression, and the language of disability has changed over time. Preferred terms also vary among cultures, countries, and languages.

Now, in English, in the United States, the word “handicapped” is outdated and “cripple” is considered insulting and oppressive. And the phrase “special needs” is not typically favored by experienced U.S. Co-Counselors with disabilities. The word “special” implies that the needs are unusual or burdensome enough to require employing a charming euphemism, and calling some needs “special” confuses people into thinking that disabled people’s needs are excessive.

Using the word “carer” to describe the person helping is disfavored by people in Britain; it implies that disabled people are “cared for,” as if in hospital.

I am choosing to use the phrase “disability assistance.” I hope that will work for most people, but it’s likely that someone won’t like it. Workshop organizers should check with the disabled people in their Community about the terms to use on fliers that will make them welcoming and inclusive as well as informative. This may seem like a minor detail, but I have found that language does affect whether people are enthusiastic or reluctant to connect.

9. Cost

The need for assistance may affect workshop or Community finances. For example, who will pay if a person with a disability wants to bring his or her own personal assistant to a workshop? Developing a uniform policy for the RC Communities hasn’t been possible yet, because needs and finances vary so much across the Communities. In London, England, for example, workshop budgets sometimes assume the cost of paid assistance. This may or may not work for other Communities.

10. Models of RC Workshop Assistance

There are many different ways to go about[7] disability assistance. I’d like to offer a few models developed by various individuals and Communities. Keep in mind that things can change over time; that disabled individuals may want to change the way they receive assistance. We get to keep thinking flexibly.

A common approach is for the workshop organizer to set up a team of people to be on an accessibility committee. This will be their workshop job. Hopefully people requesting assistance will have communicated with the organizer and identified their needs. The organizer and his or her team assess the needs and estimate the number of people required to provide the assistance. This usually works pretty[8] well, but there are also often problems. These include too few people helping, and poor communication between the disabled people and the people helping such that the needs are not well met and people in the helping role get overwhelmed.

Here are some additional models of helping:

At one workshop, a quadriplegic man who was experienced in training his own personal assistants requested that nearly everyone at the thirty-person workshop join his team and provide him with the assistance he needed from morning until night. Someone else at the workshop was willing to help him train people, so he wasn’t the only one teaching. At the beginning of the workshop it was announced that people would have the option of signing up, and they were encouraged, though not required, to do so. It ended up being a positive experience for the whole workshop. Everyone got to know the man and learned a little bit about disability and personal assistance. The workshop allowed for discharge time about the arrangement, and it was also relevant to the topic of the workshop. When I mentioned this to some disabled people, some thought it was wonderful and others thought it was a horrible idea. This model won’t work at very many workshops, but it was a lovely and useful learning experience for me, for him, and for many others. And it illustrated how we can “think outside the box” of usual ways of including disabled people and move everyone forward.

Another approach is for the disabled person to bring an assistant of his or her own choosing who may or may not be an RCer and thus may or may not participate in the workshop. Some disabled people bring their regular paid personal assistant, who occupies himself or herself during the workshop proceedings and is then available to provide assistance. How to pay for the assistant’s lodging and food needs to be decided in consultation with RC Community leaders. Again, there is as yet no Community financial policy about this, because the disability needs, as well as what is considered right and fair, vary so much across the RC Communities. Each Community must develop its own flexible thinking about its specific situation.

Should people announce their disability-related needs during the opening circle? Some announcements are essential, others are more about urgency for attention and could wait. It gets restimulating for everyone to hear a scattered list of needs in the opening circle. The group won’t really hear or remember the requests. It may be better to use paper signs or have advocates remind others individually of a particular ongoing need, such as to keep isles clear, reserve seats, or speak loudly and clearly. (One can employ fun and inviting ways, that bring laughter, to do this.) The leader can invite those with requests to write them down in advance for the announcer, and the access team leader can help the workshop leader decide which requests are important to announce the first night. Yes, this is tricky. Decisions are being made for disabled people, and this may seem, and be, patronizing. We have to learn to think, all of us together, about what is going to actually work, as well as what seems fair and respectful.

How do we think about all these factors and models? The job of an access committee is not an ordinary workshop job. It’s more interesting and requires more thoughtfulness. As mentioned, many RC articles and pamphlets offer ideas. I caution against using solely a “cook book” approach, with lists of how things should work for categories of disability.

THE KEYS TO EFFECTIVE ASSISTANCE

The keys to making disability assistance go well are (a) clear, relaxed, timely communication and planning about needs—between the person needing assistance, the organizer, and the assistants, (b) good thinking about who does the assistance, with encouragement for disabled people to be in charge of it, and (c) discharge!

Communicate and Plan in Advance

Organizers or their delegates (such as accessibility committee members who have been asked to contact people about assistance) should get in communication well before the workshop to plan appropriately. (This may mean chasing after some people—sorry!) Sufficient advance planning can be crucial for some people and situations. For example, many people need assistance upon arriving at the workshop (for unloading, getting oriented to the site, finding and settling in rooms, and so on) or even before the first evening, and the access committee may not get together until Saturday morning or later. It can make the workshop unwelcoming, or even unworkable, at the outset if a disabled person must scramble to pull together assistance on his or her own when everyone is arriving in the hubbub.

The transportation coordinator must be made aware of any assistance needed by travelers with mobility or visual impairments. This means that the organizer, the transportation coordinator, and the access team should be in communication well before the workshop.

 Organizers need to assess the time involved in accessibility jobs. The job of “announcements” or “leading singing” may take about three minutes per class or a total of fifteen minutes over the weekend. Being in a helping role may take some hours.

Organizers also need to be familiar with the site, so that they can describe it fully to people with assistance needs.

Fliers and Community announcements can emphasize the importance of communicating early, and teachers can remind their classes.

Consider Who Should Do This Job

Deciding who will be on or in charge of the access team raises crucial questions. Should it be someone who has done it before and gotten to be “expert”? Should it be rotated to give more people experience? Should we be concerned about taking advantage of some people’s well-developed but patterned care-giving skills? Could it be someone with a disability? We get to think strategically and thoughtfully about people’s re-emergence, along with seeing the job as crucial to the individuals involved and the smooth running of the workshop.

One experienced access team leader told me she was given the job at the last minute, as she arrived, along with another big job at the workshop, making it impossible to do the access team job remotely well.

Don’t assume that because someone has a disability, he or she shouldn’t be the accessibility leader or a team member. He or she may have valuable experience to offer. Various helping tasks can be shared among the team members, based on individual resources.

We can consider assigning or requesting that each disabled person choose an ally to regularly check in with him or her throughout the workshop to assess how the helping and access are going. This encourages the disabled person to reflect on the process and maybe enlist the ally to advocate if need be.

Discharge About This

Given the goals of RC, and the fact that we do have limited financial resource, we must rigorously apply our theory to the challenge of disability assistance. We need to keep discharging, and thinking flexibly! I keep being surprised that RCers are forgetting to discharge, and to check their thinking with others, as the first steps in problem solving.

Everyone involved, but especially the assistants and the disabled person, need to discharge about the process. Feelings like “this is too much trouble” are red flags for the need to discharge. If people stay stuck in such feelings, they can forget (a) that appropriately including people with disabilities is the right thing to do and (b) that it could be they, or their favorite counselor, or the workshop leader who needs assistance. That’s the beauty of this constituency: it’s not “them,” it’s all of us.

People who are new to providing assistance need to discharge on their confusions about and awkwardness with disability. Accessibility committees should build in some time for group discharge as well as encouraging the members to use some session time on discharging about assisting. They can also suggest meal-time topic tables to get ideas and input. Helping is everybody’s re-emergence issue!

People have complained to access committee members that someone is not getting enough help or that the committee should be doing a better job, without having checked first with the disabled person. I recommend that such complaints be interrupted with a firm, loving “Wait a minute! Let’s discharge.” Let’s encourage disabled people to speak up on their own behalf. Stop and think who the correct person to intervene might be. Think “empower” not just “fix.”

SUGGESTIONS FOR PEOPLE NEEDING ASSISTANCE

Plan in Advance

To people who are needing assistance: Your needs are important, and we want you to have a good workshop and be fully included, respected, and thought about. If you have substantial needs for assistance, please register early and plan on communicating clearly with the organizer. Sometimes people with disabilities forget to do this. The assumption that “I should be able to sign up at the last minute, just like anyone else” is just not workable for our resources in RC right now. Please don’t turn up[9] at the workshop expecting the assistance to be organized on-site. If you’re unclear about what you need, start working on it early enough to get help with your thinking. People who are experienced with disability know this, but sometimes newly disabled people, or those with temporary health or disability-related conditions, may not realize the importance of early and clear communication about their needs. If you need personal assistance and have someone you prefer to help you, recruit that person to the workshop. Get help planning how your needs will be met, and discharge about it.

Be Pushy and Patient Both

The efficacy of “accessibility committees” varies greatly. One man laughingly told me that he experienced the committee as a great flock of birds swooping in upon him that he had to fight off. Others have said that the committee members couldn’t be found the entire weekend or that they lost the list of needs and had to start from scratch.[10] We’re working on these extremes. Mostly people find the help useful.

Some workshops will be set up to include enough time, and enough people who can offer relaxed assistance. Other workshops, for various reasons, will not. Some leaders keep a fast pace and a tight agenda. This may not seem fair to you, and it may not be. Pitfalls for people with disabilities include feeling victimized, feeling so discouraged they give up,[11] or making too many requests for the level of free attention in the Community. Of course, you are aware that RC isn’t the only organization or institution in the world that is not fully accessible. And remember that people with disabilities are not the only constituency that isn’t yet fully included in RC. Don’t give up on expecting people to move forward on accessibility. We can be both patient and lovingly insistent!

If you have asked the workshop organizer for reasonable assistance and feel that your needs have been misunderstood or your accommodation denied, you are encouraged to contact your Area Reference Person and then, if need be, your Regional Reference Person or, finally, Tim Jackins, the International Reference Person.

Admittedly, there are some disabling conditions that RC workshops cannot accommodate yet, given the current structure and finances of RC and the timing of weekend workshops. We are not satisfied with this situation and are not settling for it long-range.

TIPS FOR PEOPLE WITH NEW OR TEMPORARY DISABILITIES

You who have new or temporary disabilities, try to take a perspective that an RC event is an opportunity to get help and to discharge about getting help. Don’t be “tough”; it is a waste of your time and effort to hide your needs and struggle alone.

If you have a temporary mobility limitation, such as a broken leg, borrow or rent a wheelchair, or suggest that the workshop obtain one for you to use at least part of the time, maybe alternating with crutches or a cane. Wheelchairs enable people to move more easily and quickly, not straining their arms. Wheels are a great invention. Young people are delighted to play in an empty wheelchair, which is a great contradiction to adults’ “seriousness” about wheelchairs. Any negative association with wheelchairs is pure oppression. Don’t miss the opportunity to raise your own awareness and push through feelings about associating yourself with people with disabilities. Join us! If there are stairs at the site and you can climb stairs a short distance, get help carrying the chair up and down. As mentioned above, I do not recommend asking, or allowing yourself, to be lifted upstairs while seated in a wheelchair, because of safety issues for you and the lifters. Of course, there is a meaningful debate, inside and outside RC, about holding to such standards in countries around the world.

If you need to lie down often, ask to have a place in the meeting room for mats or cushions. If you need to rest often or can’t keep up with the pace, first take feelings about this to several sessions. Maybe you can rest or do self-care activities at meal times and someone can bring you your meal. Or maybe there’s enough flexibility in the afternoon schedule for you to rest. If this isn’t enough, talk to the organizer to see if it really makes sense for you to come to the workshop. Asking the workshop to slow down for you isn’t workable, given our Community’s goals and limited opportunities to be together.

DISCHARGE!

If you have a disability, your workshop may be about assistance as well as the designated topic. This may, understandably, feel frustrating or infuriating because you signed up for a workshop on the topic, not on “help related to disability.” The key is to keep discharging about it and keep asking for what you need. Eventually you and the people in your Community will be able to accommodate you better and better. On the other hand, you may feel wonderfully included in ways that you are not used to at home or in the wide world. Great! But discharge about this, too!

Some disabled people experienced with assistance may feel that they don’t need to discharge any more about this. I don’t believe it. I have never met an experienced disabled person (and I have met hundreds) who couldn’t still use tons of discharge on what it is like to be helped. Having a few mini-sessions before and at the workshop on what it is like to once again be assisted, and what it reminds you of, is a good idea.

What if your Community doesn’t seem to recognize your needs for assistance as you understand them, or they tell you, “We don’t have the resources,” when you think they do? Yes, this is difficult. It may feel like oppression, and it may be oppression. I remind disabled Co-Counselors that here in RC we can discharge about it, and tackle the barriers with support. Taking on[12] the RC Community about access may feel as infuriating as it does in the wide world. But rather than feeling victimized by it, you can reach for and discharge about becoming a resource person for your and other people’s needs for assistance. You are a leader here, in a powerful worldwide movement of inclusion of people with disabilities, and are offering a model of clarity about people’s needs and getting help.

El Cerrito, California, USA


[1] Funny means strange.
[2] The no-socializing policy of the RC Communities states that Co-Counselors should not set up any relationships, other than Co-Counseling, with other Co-Counselors or with people whom they first meet in a Co-Counseling context.
[3] “Roughing it” means living without many comforts.
[4] The Guidelines for the Re-evaluation Counseling Communities, which are the policies for the Communities
[5]  In this context, tell means know.
[6] On the spot means at the moment.
[7] Go about means proceed with, carry out.
[8] Pretty means quite.
[9] Turn up means appear.
[10] From scratch means from the very beginning, with nothing.
[11] Give up means quit trying.
[12] Taking on means taking responsibility for.


Last modified: 2017-05-07 06:35:41+00