17 Group Support for Disability
Description
This article is from the Essays on the topic of Women and Disability.
17 Group Support for Disability
Sharing Our Expertise Through Peer Support
by Teresa Andreychuk
Inviting a woman with a disability to join in a group without
providing supports essential to her participation is like saying
your presence is really not important or "you're not welcome
here."
Women with disabilities at the Independent Living Resource
Centre (ILRC) in Winnipeg have been meeting weekly as a peer
support group to increase awareness, share experiences, and
provide mutual support about issues of abuse in their lives.
This article reflects the words and experiences of ten women with
disabilities who, with the support of two co-facilitators, had
the courage and honesty to come forward and share their
collective wisdom. We spent several hours talking about what they
wanted to say, and I hope that this is an accurate
reflection of the discussions. Their thoughts provided the basis
for this article and certainly add a great deal to the monologue
about how--technically--things got going.
Why peer support?
Peer support is a powerful means of learning through the sharing
of experiences. This sharing, among those who share similar
backgrounds or disabilities or experiences, can be implemented
one-on-one, in small groups, or in larger groups. These peer
matches may be around a specific issue, such as support during a
pregnancy, or of a more general nature, such as support for
people managing their own attendant care. The peer support may be
formal, as was the case of this particular group, or
informal, which happens a lot over coffee at the centre.
Accordingly, the peer support matches last for different, and
sometimes indeterminate, periods of time.
Many times, peer support is of mutual benefit to all parties
involved. This is very different from the traditional "expert/
professional-client" relationship that many of the women were
usually engaged in.
Getting started with peer support on abuse
Although the ILRC routinely incorporates peer support into many
of its programs, we were a bit concerned about how to safely
provide peer support on issues of abuse.
At the time, we seemed to be envisioning more of an abuse
"counselling" or "therapy" group, and weren't sure that we had
the expertise to lead such a group as we were (and are) not
qualified abuse counsellors. Someone pointed out to us that in
peer support, no one is really any more qualified or expert than
anyone else. Women mentioned things like: "I know it will be
difficult, but it's worth the risk," "I like that there isn't an
expert here--it's less intimidating," and "Everyone shares an
equal risk in keeping things confidential." We were then able to
view this as a shared risk-taking opportunity, which seemed to be
more manageable. These thoughts reminded us that we were there to
facilitate sharing, not to protect people from feeling and being.
We got started by contacting women who had mentioned the need for
this kind of peer support. Running the group was viewed as an
opportunity to research the best strategies and techniques for
doing group peer support on abuse in the future. We offered an
eight to ten session "Women's Peer Support Group on Abuse" which
was open to any woman with a disability who had
experienced any type of abuse in her life. Support was available
to those requiring sign interpretation, attendant care,
transportation subsidies, etc. Response was significant and
quick. In a short period of time, we had the names of ten
interested and available women, which we felt was the maximum we
could accommodate in one group, so no external advertising of the
group was necessary.
Group meetings
The group meets weekly in the evenings at the ILRC. Due to the
relatively small size of the community of people with
disabilities, we did offer the possibility of alternate space
outside of the ILRC, but the ILRC was seen as being safe enough
for everyone. The ten women bring a variety of different
disabilities, which they have lived with for different amounts of
their lives, as well as a variety of experiences with abuse. We
felt that this would offer some unique perspectives and
education about the influence of different kinds of disabilities
or limitations and about different types of abuse.
The group was seen as a chance to increase awareness about
abuse, to share experiences about abuse and its effects, to share
coping and healing strategies, and to provide support to each
other. Additionally, we (as facilitators) saw it as a
chance to learn more about the unique aspects of experiencing
abuse related to having a disability.
The women decided on an approach that would combine
presentations of educational or awareness raising information
(much of it from the general women's community) with the unique
insights from the participating women. This set the stage for the
opportunity to build an understanding of the social and political
context of abuse and violence against women with
additional issues related specifically to being a woman with a
disability. From the very beginning, both aspects, being a woman
and being a woman with a disability, were seen as equally
powerful factors in feelings of vulnerability and the experience
of abuse.
Topics and expectations
The initial meeting was spent setting guidelines for the group,
defining topics to cover, talking about expectations, and
getting to know each other. The guidelines were basic, and
included respecting confidentiality, respecting experiences, not
minimizing one's own or someone else's experiences, not feeling
pressured to talk, and talking only if you wanted to.
The topics to be covered in the sessions included a chance to
discuss each of the different types of abuse, such as physical,
psychological, emotional, and verbal abuse, sexual abuse and
sexual assault, date rape, neglect, financial abuse or
exploitation, and domestic violence. This was viewed as a chance
to examine some of the myths and realities of abuse, from a
women's perspective and from a disability perspective. Other
topics covered how to deal with abuse, self-care, self-
protection, and coping strategies. Topics of self esteem, self-
confidence, and trust were also identified as important to touch
upon. Looking at some of the unique aspects of disability such as
extra vulnerability, dependence, learned helplessness, and
perceived (by others) lack of sexuality was also a key area. A
look at the social, political, and economic position of women,
and particularly of women with disabilities, was seen as a
foundation and logical starting place.
Initial discussions also included sharing expectations of the
group, so that we could identify those which we thought could
realistically be met within the parameters of the group. Some of
the expectations were specific to abuse such as learning more
about different kinds of abuse or learning more about people who
abuse. Others talked about sharing as a way of knowing that we
are not alone, or as seeing what others have had to put up with.
Expectations were also related to self-development, such as
learning to trust more, and feeling better about oneself. Some
women also hoped for a more "political" focus, in terms of
empowering oneself and other women, or learning that the
personal is political.
Other expectations included the opportunity to talk about sex and
the image of the person with a disability, and to search for
commonality--knowing that people would understand. Finally, there
was the desire for a woman's group where we could get together
and talk about experiences. An overall expectation was to get
(and hopefully give) support.
It is interesting to note that some of the expectations or needs
are not specifically related to the experience of abuse. These
are related to areas which are more commonly discussed in
generic women's groups, but which are sometimes not viewed as
being relevant in the lives of women with disabilities, such as
sexuality or relationships.
Why for women with disabilities?
When we asked group members about why they saw a peer support
group on abuse as important, and why specifically for women with
disabilities, everyone had something to share, and a number of
"themes" or commonalities emerged. The first had to do with the
opportunity to participate. One woman began by talking about the
fact that there are lots of groups for women, but none in the
community for women with disabilities. And, it's pretty rare that
notices of these meetings are passed around to women with
disabilities, particularly those with psychiatric disabilities.
Also, they pointed out that many of the groups are held in
places that are not accessible or are hard to get to. Sometimes,
even when you phone ahead, they say the place is accessible, but
when you get there, stairs keep you out, or you can't get into
the bathroom. People don't mean to mislead you, they just don't
know what to look for. Accommodating special needs, such as
inability to attend all meetings due to health limitations,
freedom to move around at meetings in order to be more
physically comfortable, or adjusting meeting times and lengths to
meet energy/exhaustion levels, can present greater
opportunities to attend.
The availability of supports is also an important factor.
Different women agreed that inviting a woman with a disability to
join in a group without providing (or thinking of) supports
essential to her participation is like subtly saying your
presence is really not important or "you're not welcome here."
Even if it's not blatant, the message is the same. Something as
simple as whether or not a woman can afford the cost of bus
transportation to get to the meetings and home again is often
overlooked. A number of women agreed that when you can't afford
it, or have to always explain or get medical notes, you feel
badly about yourself. And, this sure doesn't help someone whose
self-esteem is already low.
Another noted that it is a big step to join in any group, and if
you feel and look different, it's that much harder. Everyone
agreed that there is lot more sharing (in the current group)
because of common or similar experiences. This led into
discussion of how it feels to be one woman with a disability in a
group of non-disabled women. The consensus was that you feel out
of place. Why? Because you can't relate or can't comprehend.
There's a lot that you miss out on by growing up in a really
protected or isolated way. In some ways, it's like growing up in
a different culture, but how do you explain that? It just
wouldn't feel comfortable. You'd feel like you're always having
to educate them on your disability and then share or explain
about your abuse--this is double exhaustion.
One woman mentioned that it is sometimes harder for non-disabled
women to relate. For example, the chair keeps them at a
distance. Sometimes, they just see the chair and not the person.
It's like you're invisible. Or, other women added, they spend a
lot of time worrying about what to say or what to do--to not
offend you. For some, it's a lot less trouble to just ignore you
or not be involved with you.
Various comments also noted that having an abuse support group
for women with disabilities acknowledges their experiences as
real. Too often, people believe that people with disabilities are
not abused. They end up thinking things like "who would do such a
thing?" Other comments were that, because we (women with
disabilities) control the group, we do what's important for us,
not what someone else sees as important. This lets us pay
attention to differences our disabilities make. We're able to
talk about feeling more vulnerable to abuse and assault and not
feel badly or selfish about saying so. The fact of the matter is
that we are in a number of situations which place us at higher
risk, and there are people who will look at us as easy targets.
They also talked about not having to prove their credibility in a
group of women with disabilities. Remarks from the women
included: some people send a message that when you have a
disability, you're "just not right." Or people think that your
mind is gone, or assume you're deaf when you're not. Your
disability really becomes an issue, as if maybe you're just over-
emotional, or psychotic, and don't really know what's
happened. One woman also spoke about her frustration of always
being accused of being drunk because her speech impairment makes
her voice sound slurred.
The group also provided the opportunity to talk about
differences (from non-disabled women) that the women shared
growing up and the impact this had on them. For those that
acquired disabilities early in life, they talked about often
being blamed for hardships in the family. Many were put down
because of their disabilities. They mentioned overprotection and
isolation as key features of growing up. And, they talked about
being treated like incompetent children, even as adults. The lack
of positive role models and missed opportunities to talk about
things that "ordinary" kids do, such as relationships, were seen
as being quite damaging. As one woman said, it's hard to
understand what all of this does to you and how it affects you.
Feelings about the group
Perhaps the most direct way of describing what attending the
group has meant and why it has been so important is reflected in
the following comments from the women:
I've enjoyed it. When I talk about certain experiences, people
will understand more--people understand where you've been.
The shared experiences are important. I hope it becomes ongoing.
It has become an important part of my life.
You're not alone... Sometimes I wonder why I'm here--it can be
really hard--other times there's a real sense of accomplishment.
Learning things. I've learned a lot about the differences
between experiences of men and women, disabled and non-disabled--
that's helpful.
Why do I keep coming? It's a chance to learn something I've never
heard about before; a chance for open discussion without being
judged.
Getting together with others--the feeling of togetherness.
Learning from one another, not being counselled or told what to
do.
I think it's great. We all take away something personal for
ourselves. We can think about everything and use what we need.
There's a lot of asking "why?", and this leaves a lot of food for
thought.
With regard to openness, we've got nothing else to lose. We've
all lost a lot.
Hearing different people's experiences and reactions really
helps.
One of the most telling things about the importance of the peer
group was that those attending on the first night kept coming
back week after week, despite the difficulty of facing some of
the topics covered.
Where to go now?
No one is really sure what the future holds. Most would like to
stay connected as a "semi-permanent" group, but are not exactly
sure what this would look like. Maybe it will continue as a
general women's discussion group, maybe as an ongoing personal
growth series, or just getting together socially to have fun. In
the meantime, more attention needs to be paid to reducing
barriers and addressing ways that the women's community can be
more inclusive of women with a variety of different disabilities
and support needs.
Teresa Andreychuk is a staff person at the Independent Living
Resource Centre in Winnipeg who is currently coordinating the
Centre's research on Abuse and Disability.
The Independent Living Resource Centre would like to acknowledge
the funding support of the Department of the Secretary of State
of Canada. Many thanks also to Kay, Marilyn, Carolyn, Donna, Jo
Ann, Diane, Donna, Ellen, Rita and Joyce, and to Sharon who
helped facilitate the process described in this article.
THE ROEHER INSTITUTE
The Roeher Institute is a national institute for education,
information, and the study of public policy affecting persons
with an intellectual impairment and other disabilities. The
Institute has initiated two projects in which readers of this
journal might be interested:
Research Study on Violence and Disability
The Roeher Institute is currently undertaking a study to examine
the forms of violence/abuse experienced by people with
disabilities, and the legal provisions, policies, programs, and
response systems that are now in place to respond to and prevent
violence.
In order to find out how people experience violence, this study
will include a number of interviews with people with
disabilities, their families and advocates, service providers,
and police across Canada. The study will analyze the impact of
difference of gender, race, type of disability, etc. on the forms
of violence experienced by people with disabilities.
People who have been victims of violence, as well as individuals
who have reflected on the forms of violence and abuse
experienced by persons with disabilities, will be interviewed.
The Roeher Institute will publish the findings of its research.
This study will include implications for policy and programmes
related to people with disabilities.
If you have any questions about this study or know of people who
might wish to be interviewed for it, please contact the Roeher
Institute (see below).
Women's Research Network
Many women are involved in or have expressed an interest in the
application of feminist theory to the area of disability. At The
Roeher Institute we have agreed to initiate an international
network and to set up an information exchange.
If you would like to be part of this growing network of women
researchers, please let us know by sending us your name,
address, affiliation (if any), and areas of interest. Please
address enquiries or correspondence to:
Marcia Rioux, Director
The Roeher Institute
Kinsmen Building
York University
4700 Keele Street
North York, Ontario
M3J 1P3
Phone (416) 661-9611
FAX (416) 661-5701
Continue to:
My Books
