2. True or False?
✚Individuals with disabilities can serve as the chairperson of a board of
directors.
✚Board meetings are too long and boring for individuals with disabilities to get
much out of them.
✚Only people who can read and write can serve on a Board or Committee.
✚The voices of individuals with disabilities influence the decisions the board or
committee makes.
✚Mentors tell people what to say and manipulate their opinion.
✚Color coding materials is childlike and too much work.
✚Organizations’ climate and culture changes when individuals with disabilities
are involved in leadership roles.
✚If someone breaks down and cries at the board meeting, the best thing to do is
ignore them. 2
3. ə
to·ken·ism noun ˈtōk ˈniz m:ə
The practice of making only a
perfunctory or symbolic effort to do
a particular thing, esp. by recruiting
a small number of people from
underrepresented groups in order
to give the appearance of equality
within a workforce
in·clu·sive adj in-ˈklüsiv, -ziv:
-
Deliberately aiming to involve
all types of people
3
4. “He who sells you the token instead of the coin always retains the power
to revoke its worth, and to command you to get off the bus before you
have reached your destination. Tokenism is a promise to pay. Democracy,
in its finest sense, is payment.”
Dr. Martin Luther King, Jr. -- Why We Can’t Wait, 1963
5. Why Are Inclusive Boards
Important to Organizations?
Betty Williams Peter Burns
5
6. How Will This Training Help Our
Organization?
A Focus on Six Key Elements of Inclusive Practice:
Authentic Membership
Effective Supports and Mentors
Deliberate Communication
Full Participation
Meaningful Contributions
True Influence
Commentary from National Experts Regarding Their
Experiences and Insights
An Overview of Barriers and Successful Strategies for
Promoting Inclusive Organizational Practices
Examples of Possible Individual and Organizational
Outcomes
6
7. Training Agenda
Welcome
Introductions
Overview
Elements of Inclusive Practices
Break
Elements of Inclusive Practices, continued
Transformational Outcomes
Wrap-Up
Adjourn
7
8. Bernard Baker, SABE
Peter Burns, Arc-US
Celia Feinstein, Temple University
Chester Hill, NH People First
Graham Mulholland, PA DDC
Tia Nelis, SABE
The Voices of Linda Pogue, GA People First
Ileen Shane, PA DRN
Experience
Steve Suroviec, PA OVR
Self-advocates and members of Nancy Thaler, NASDDD
boards of directors, advisory Vicki Turnage, AL People First
boards, committees and other
Nancy Ward, Arc-US
policymaking entities share their
Liz Weintraub, CQL
perspectives on tokenism and
Betty Williams, SABE
inclusion.
Eloise Woods, AL People First
Joe Wrinkle, MO CDD
8
9. Inclusive Board Are Transformed
Individuals
Want a Voice Authentic Gain Acceptance
Encourage Change Exchange Establish Bonds
Structural Social
Get Access to Altered Culture Shared
Resources & Structure Understanding
Improve Legitimacy Maintain Order
Board of Directors
Adapted from original by
Christopher Fredette, 2007
9
10. Inclusive Board Practices Provide:
✚ Authentic Membership
Supports and Mentors
Deliberate Communication
Full Participation
Meaningful Ways to Contribute
True Influence
10
11. Do we allow impatience to deprive us of the full benefit of all those other
thinking minds out there? Do we give token acknowledgement to others, and in
doing so missing out on adding to our own knowledge and abilities? –
stillthinking, Essays for Thinkers
Authentic Membership
“They’re the only people with the moral authority.”
-- Graham Mulholland
12. Authentic Membership provides equal status to, and
recognition of, the importance of the individual’s presence
as any other member of the board of directors.
Chester Hill Linda Pogue
12
13. Lack of knowledge about the
organization
Inconsistent leadership support
Poor attendance
“Advisory” or “Honorary” status
Barriers to Authentic Difficulty coordinating
attendance with individuals’
Membership support systems
“Self-advocates should not just take
Need for personal assistance
up a spot so organizations can during meetings
check the self-advocate box in their
Fear that a self-advocate will act
checklist. Once self-advocates are inappropriately during the
on boards, we need to speak out meeting
and have a voice.” – Bill Krebs
Meetings are held in inaccessible
buildings or locations
13
14. Board orientation
Board retreats and
fellowship opportunities
Leadership commitment
to inclusion
Strategies That Promote
Authentic Membership Management
commitment to inclusion
“We like to look at each person to
Designated budget for
see what they have to contribute. inclusion supports
You have to take the time to see
how people will meet the needs of Needs of organization
the organization and take the time match the interests of the
to help people understand the potential board member
organization.” – Peter Burns
14
15. Discussion Questions
Individual Organization
Describe something that What rituals or
someone did that made practices do you have
you feel like you were part that integrate new
of a group? members into your
organization?
15
16. “Change the environment, not the
person.” – Buckminster Fuller
Effective Supports and Mentors
“One of the best things a board can do is give people a mentor--
without passing their own judgment, they can help.” – Betty Williams
17. Effective Supports and Mentors provide the tools and
coaching opportunities needed to prepare for and be
effective at meetings of the board of directors.
Eloise Woods Steve Suroviec
17
18. Lack of transportation
Management resistance
Other board member
resistance
Lack of assistance at meetings
Barriers to Effective
Supports and Mentors Length of meetings
Lack of resources for supports
“It’s really important to have Turnover of supports
people with disabilities to inform
all that we do and provide us with Difficulty accessing
insight. The challenge we face is information
supporting people.” – Peter Burns Preparation time is too short
or rushed
18
19. Provision of mentor
Mentor who is employee of
organization
Mentor who is a fellow board
member
Travel advances
Strategies That Promote Assistance with travel
arrangements
Effective Supports and Materials in alternative formats
(large print, etc.)
Mentors Color coding materials
“Nothing moves your soul more Using icons for minutes and
than to see the light go on in committees
someone’s head that says, ‘I can do Personal assistance during
meetings
this.’ ‘I can take control of my life.’ Stipends, financial support
Applauding the perception is easy. Altering meeting space
Helping to make it reality is tough. arrangements
– Michelle Hoffman Seating near leadership or speakers
Adding a decision page on the
packet to show what needs action
and what is information
19
20. Discussion Questions
Individual Organization
Describe how a mentor or How does your
support person helped you organization evaluate the
be an effective board effectiveness of mentors
member. and the other supports you
provide?
20
21. “This is part of what I consider dialogue—
for people to realize what is on each
other’s minds without coming to any
conclusions or judgments.” – David Bohm
Deliberate Communication
“ If you want to change the meeting, slow it down, it changes the whole
dynamic of how people interact with each other.” – Nancy Ward
22. Deliberate Communication is an interaction that takes into
account the way the individual receives, processes, and
expresses information and ideas.
Joe Wrinkle Vicki Turnage
22
23. Difficulties using English
Difficulty understanding
individuals’ speech
Lack of functioning assistive
technology
Barriers to Deliberate
Response latency; rushing
Communication the speaker
“Asking self-advocates for their
Speaking for person,
opinion means that board
finishing sentences
members should be willing to
listen to those opinions. Learning Speaking over the person,
to increase your ability to listen to interrupting them
self-advocates is an important way
to help them be more than a token.” Ignoring the input from the
– Bill Krebs person
23
24. Use of technology during
meetings
Use of talking stick for
recognizing speakers
Practice using Rules of Order
Strategies That Promote Eliminating jargon and
acronyms
Deliberate Communication
“Conversation levels during board Use of plain language and
meetings should support self-
explanation of unfamiliar
terms
advocates on the board. It is
important that boards use words in Use of interpreter familiar
the agenda, materials, and with individual’s speech or
discussions so that self-advocates communication style
understand. This is how they Making sure the person is
support participation.” – Bill Krebs asked for their input
24
25. Discussion Questions
Individual Organization
How do you know when What does your board do
someone has truly listened to ensure that every
to what you have to say? member has a voice and
uses it?
25
26. “We have to understand that the
world can only be grasped by
action, not by contemplation.” –
Jacob Bronowski
Full Participation
“I think how you get to be included is to eat lunch with people.
Sit and share with them.” – Tia Nelis
27. Full Participation is providing a perspective and actions
that are needed to move the organization closer to its
mission and purpose.
Nancy Ward Ilene Shane
27
28. Difficulty coordinating
participation within the
organization
Fear of failure or rejection
Barriers to Full Lack of confidence
Participation Lack of information
“Fear gets in the way of speaking
up. It helps to get to know others, Lack of engagement
if you know someone. When you during meetings
are not comfortable, you don’t
participate.” – Chester Finn Size of board or
committee
28
29. Appointing two or more
individuals with disabilities to
serve
Pre-meetings
Frequent breaks or rest
periods
Strategies That Promote
On-going board training
Full Participation
Opportunities for board
“The director of my agency helped fellowship
me out. I went to his office before
the meeting. We have board Participation in committees or
retreats. When a new board sub-committees
members comes onto the board we Team building exercises or
go over to their home and take activities
them out to eat.” – Chester Hill
On-going contact between
meetings
29
30. Discussion Questions
Individual Organization
Describe something that a What challenges has your
board you serve on asked organization had to
you to do that made you overcome in order to
feel like a full participant? ensure full participation?
30
31. “No man is so poor as to have nothing worth giving: as
well might the mountain streamlets say they have
nothing to give the sea because they are not rivers.
Give what you have. To someone it may be better than
you dare to think.” – Henry Wadsworth Longfellow
Meaningful Contributions
“I think you really need to be included in all parts of the board;
not just the board meeting.” – Tia Nelis
32. Meaningful Contributions are the efforts made to fulfill the
responsibilities of board membership in ways that demonstrate
commitment to the board and the organization.
Bernard Baker Celia Feinstein
32
33. Use of jargon, acronyms
and unfamiliar terms
Lack of knowledge of
individual’s relevant
expertise and experience
Barriers to Meaningful Low expectation for
Contributions individual contribution
Leadership is not
“You’re going to miss out—we have committed to inclusive
something to give.” – Bernard practices
Baker
People receive support,
but no changes are made
within the organization or
group
33
34. Specific board role or duties
Board assignments
completed in pairs teams
Identifying preferred areas
Successful Strategies to of input or concerns
Promote Meaningful
Contributions Use of parking lot to follow-
“One of the contributions people
up on deferred items
with disabilities make is to help
Soliciting agenda items from
slow down the process and I mean
all board members
that in a positive sense so everyone
can participate.” – Ilene Shane Provision of leadership and
other types of training
34
35. Discussion Questions
Individual Organization
In what ways do you feel What have you done to
you have made a difference make it possible for board
by being on a board of members with disabilities
directors? to contribute?
35
36. The problem with those practicing tokenism is
that they always make sure that their efforts are
seen and publicized; it’s as is if they are doing a
lot, when well in fact, they have done close to
nothing, in terms of impact. – Benjie Oliveros,
Analysis
True Influence
“Standing up for what you believe is a dirty job.
Rewarding, but not pleasant.” – Max Barrows
37. True Influence is having the respect and consideration of the board to
the extent that they agree to act on ideas or concerns that the
individual with a disability has expressed.
Liz Weintraub MJ Bartlemay
37
38. Lack of organization
policies affirming
inclusive practice
Lack of opportunities to
express opinion
Barriers to True
Influence Agreeing that problems
pointed out exist but no
“When you get a letter in the mail
action is taken
threatening you, you really know
you had an impact.” – Chester Finn
Advisory role only with
no decision making
authority
38
39. Written policies that require
inclusive board practices
Adoption of
recommendations and/or
suggestions by board
members with disabilities
Strategies That Promote Amended by-laws to expand
inclusion
True Influence
“How do you gain influence? Ask Leadership or co-leadership
roles
self-advocates to do other
activities; to testify, be on Adoption of “Nothing About
committees, go places to meet Us Without Us”
people, go to trainings. Build up
people’s confidence so they believe Board rotation adds new
people with disabilities with
in themselves so they can speak for different voices and
themselves.” – Tia Nelis perspectives
39
40. Discussion Questions
Individual Organization
Describe something an Looking back, is there an
organization changed occasion where you
because you spoke up. wished you had really
acted on changes you were
being asked to make by a
board members with a
disability?
40
41. “The more diversity of interactions a particle
has, the more complexity, structure, and richer
self it has—the more possibilities and
probabilities it has.” – Mark Trodden
Transformational Outcomes
“The presence of people with disability changes the environment
positively. It becomes more rational.” – Nancy Thaler
42. Transformational Outcomes are changes in the
organization’s culture where everyone is valued as key to
the organization success.
Tia Nelis Nancy Thaler
42
43. Greater self-advocacy and
self-determination
Individual Outcomes
Increased self-confidence
Expanded interpersonal skill
“It helped me a lot. How to work
with people. How to ask questions. Creation of social
How to feel good about myself.” – networking opportunities
Elouise Woods
Expanded leadership roles
Enhanced status within
community
Encouraged to fill broad
range of roles within and
outside of the organization
43
44. ✚ Change in organization’s goals and
priorities change
Organizational Increased emphasis on community
Outcomes inclusion
Expanded perspective of
“I think we all benefit from diversity.
individuals’ capabilities
People with disabilities enrich the
experience by bringing a perspective Expanded organizational influence
that’s unique. I think that’s critical.” –
Celia Feinstein Increased quality and satisfaction
People with disabilities are engaged
in planning at all levels of the
organization
✚Adoption of person centered practices
✚Decreased use of segregated supports People with disabilities are hired
✚Change in organizational structure People with disabilities are part of
quality monitoring and
✚Increased resources or funding
improvement efforts
44
46. Wrap-Up
Thank you for coming to the Advanced Beyond Tokenism
training. We wish you success in your future leadership
efforts. We hope this training will help you become more
effective at supporting individuals with disabilities who
serve on boards of directors, advisory boards, committees,
and any other entity that provides an opportunity for them
to be heard.
46
47. Acknowledgements
The Beyond Tokenism Research and Education Center expresses their deepest appreciation to the
following individuals and organizations for their contributions to this training:
Bernard Baker, SABE Ilene Shane, PA DRN
M.J. Bartlemay, The Arc-US Steve Suroviec, Director, PA OVR
Max Barrows, SABE Vicki Turnage, AL People First
Peter Burns, The Arc-US Nancy Thaler, NASDDD
Randy Constales, The Arc-NM Nancy Ward, The Arc-US
Celia Feinstein, Temple University Liz Weintraub, CQL
Chester Hill, NH People First Betty Williams, SABE
Bill Krebs, Beyond Tokenism REC Elouise Woods, AL People First
Graham Mulholland, PA DDC Joe Wrinkle, MO CDD
Tia Nelis, SABE Pennsylvania Council on
Linda Pogue, GA People First Developmental Disabilities
Steve Scarton, Arc-NM Self-Advocates Becoming
Empowered, Inc.
Sheila Hunter, PA DDC
Videography by Mark Friedman, Ph.D.
47
