Chapter One: Thinking Like an Organizer



Most of us get into the organizing business to improve things for others, as well as ourselves.  Often, even though we have experienced problems or injustices ourselves, we become motivated when we see things happening to other people.  For many of us it is easier to address others’ issues than it is our own.  Sometimes something will happen to us and we know the same thing has happened to others.


Different ways to change the world

There are many ways to make change.  Often our desire to help others leads to fixing things for them.  While this approach addresses the specific problem of the moment, it does not help build a movement and it does less to empower the other person.  Those of us with disabilities, or who are not generally considered part of the “mainstream culture”, get many messages that we are not important – or are less important.  It is hard not to internalize these messages in some way.  An important part of our work as organizers is to help folks discover they can be the solution themselves.


In my organizing work with ADAPT[1], I and others talk about this choice as “the organizer versus social worker approach.”   “Social Worker” is an emotional term for many in the disability community, and often not in a good way.  This sometimes surprises social workers and other people who are not on the receiving end of social work.  There are good social workers who really help people every day.  Yet there are many good reasons to be leery of social workers as the profession is most often practiced today.  People find social workers often try and micromanage their lives, to barge uninvited into their homes, tangle their lives in paperwork that leads slowly to nowhere, and similar deflating, unhelpful bureaucratic crap.

Put in the starkest terms, the social worker approach is to do for you; the organizer, on the other hand, helps you do for yourself.


When I trained with my mentor Shel Trapp[2], he liked to start discussing this topic with a scenario that goes like this: Walking down a street you see a baby alone in the road.  What do you do?  Most people say something like “well, I would pick up the baby and take it to Child Protective Services or the police.”  But Trapp would say: the organizer rushes up to several nearby doors, knocks urgently and when the occupant answers shout loudly “there is a baby in the road.  What should we do?”  Heartless to the baby?  Perhaps, but it forces the community to deal with whatever led to that situation, to work together to address it and reach a solution, and hopefully, with a bit of nudging, to move on to other issues they can address together.

Social workers know the system and they push you through it, even if the system sucks. Organizers on the other hand, help you look for the desired solution and chart a course toward that solution.  Instead of asking you to force yourself to fit a mold that never intended to include you, organizers help you look for a new reality that acknowledges and allows for your differences.


Many hands make light work 

The organizer approach is not only more about empowering the community you are trying to work with; it is helpful to you as an organizer/activist/advocate as well.  Each of us has limited time and energy.  As we get older we know this to be even more true!  We just can’t do it all.  Alone we are one small voice, even if we do have some letters after our names or a title, even if we know a whole heck of a lot about something.  But organizing increases your power, creativity and effectiveness.  All the old sayings apply: “many hands make light work”, “two heads are better than one”, “you scratch my back and I’ll scratch yours,” etc.


Most folks I know who organize in the disability community aren’t paid to organize, so our limited time, energy and resources can be even more limited.[3]  Involving other people allows the work to be spread around.  It lets folks do what they enjoy and are good at, while other folks do what they enjoy and are good at.  Some of us love to talk on the phone; those are the people to make the calls for the meetings.  Some people like to dig into things and find out how they tick, these are great researchers.  Some people are artsy and make great posters.  Some speak powerfully and serve as terrific spokespeople.  And we can all learn to do new things with a little encouragement.  Look to the different talents of those you are with, and don’t stop with the obvious ones.  Of course someone has to do the work no one is that into, but you can share that too.  Switch it up every now and then too, you never know what you may discover.  Bringing all the pieces and talents together is the challenge of organizers.


Finding a balance 

Through organizing, people not only have a hand in identifying the issues they care about and the goals they want to achieve, they have a responsibility to help make it happen.   All this said, as organizers we need to make a balance between the “pull yourself up by your bootstraps” approach and “doing for” others.  Some people need more supports along the way.  It hurts to see some in the Independent Living Movement expect that if they hand someone who has never lived on their own a list of affordable, accessible apartments and wish the person good luck that’s all that need be done.  If that person can do it on their own why should they bother to come to you?  It also hurts to see people with intellectual disabilities used as mouth pieces for professional staff positions and ideas, to be relegated to ice cream socials at conferences about their needs.  You need to strike a balance, especially if we want to be inclusive.

The point is to help folks to see and develop the expertise within themselves.  Just living with a disability is an education in itself, and it gives those of us that live it – those of us with disabilities — experience and expertise that is extremely valuable but often not valued. It doesn’t mean people with disabilities know everything, but we know a lot of things. And this expertise should be valued and respected.




From me to we

When you think about what you need to do and what you are doing, think in the plural.  Change the “me” to “we”.  The things we achieve and accomplish come from the contributions of all who are involved.  The figure-heads, those singled out as leaders, play an important role but they could not play that role successfully without the involvement and contributions of the other members of the group.


The power and skills within each of us

Shortly after the passage of the Americans with Disabilities Act, ADA, ADAPT was surveying businesses to see if they were at least minimally accessible.  Three of our most dedicated members Karen Greebon, JT Templeton and Wayne Spahn were always ready to go out and survey.  They didn’t read very well, could not physically write and would not remember all the details of what they saw at several locations in one day.  So I considered how to harness their enthusiasm and willingness to work while collecting the data we needed for the survey.  We created a simple four question survey that would cover the basics and I armed them with cassette tape-recorders to orally record their findings.  This worked about a day and a half (they were very polite to me).  The recorders were falling down where they could not get to the buttons, the paper was blowing away as they struggled with the recorders – it was a fiasco.  But Karen and JT were much too creative to let that stop them; they used a simple solution that had worked for them many times.  They just asked one of the staff on duty at the business they were surveying to help them fill out the questionnaire.  This put the business on alert they were being surveyed.  It called staff’s attention to problems our surveyors found and it got the survey completed without me or someone having to transcribe recorded answers.  And while they might not remember every detail of every visit, they knew when someone was lying to them and we could go out and redo the relatively few surveys that were filled out inaccurately.  Wayne found another solution and found people to go with him, people who might not know about the ADA and access but who could write.


 The organizer approach calls upon each of us to find the skills, the power within ourselves.  Sometimes we need to support or show others how, but that is not the same thing as “doing for.”  Sometimes the results are not the prettiest, most efficient but if they work that’s the bottom line.  Sometimes it seems quicker to do it yourself, but if you remember there is more than one goal to the things we do – getting it done yes, but also empowering our people – it really is not faster in the long run.  The empowerment part applies to you as well; almost without exception we can all improve our self-esteem and self-expression.  Last but not least, organizing builds the feeling of group solidarity, and so it builds the group.

Three women in wheelchairs

Robin Stephens, Lillibeth Navarro and Paulette Patterson chant for access. Photo: Tom Olin 

Lasting change

Increasing the dignity and power of the folks in our organization creates the greatest change of all.  As people see the changes they have made they become less likely to put up with the unacceptable.  After a short while the numbers of people who can do various tasks increases as does peoples’ comfort-level with different situations and endeavors.   There is a somewhat corny thing people say about social jus’ tice work, “I want to work myself out of a job.”  We rarely accomplish this.  We rarely completely solve a problem.  However, if we recruit and involve others to take our places, build a group identity, the struggle can evolve and go on.



One approach we often have used in ADAPT to show others how and give support, is to use teams to do things, especially leadership teams.  This allows several folks to take on roles, for more experienced people to guide newer people while at the same time allowing for new ideas and approaches.  There are many other advantages to this team style, but we can get into those later.


Why did you get involved?

As you, the organizer, look to how to get people involved and organized it is useful to think about why people get involved and why they don’t.  Write two lists on a piece of paper: on one list why you are involved in the things you are involved in and why people you know get involved.  On the other list write down reasons you have shied away or not gotten involved in various groups or campaigns. Try to be concrete, use real examples and avoid generalizations.  Think in terms like “I wanted to join this group because…” instead of “people like groups that….  The more concrete and realistic you are the more helpful the lists will be.  These lists are a good start at thinking about how to attract people and how to move away from the negative parts of getting involved.  Get together with some friends and share your ideas on this.  Hah!  You have already gotten a few other people involved.


Working Together Produces Self Worth

When we believe we can do things we begin to feel we are more worthwhile.  Instead of just ignoring or wishing or planning to do them, we do them.  And we become much less tolerant of putting up with garbage.  As the negative messages of disability are pushed on us every day it is even more important to not just learn these lessons one time, but to keep having them reinforced.  We can learn these lessons over and over and we will still learn new things from them each time.


No Magic Solutions

The fact is there are no silver bullets.  It all takes work and time. The Americans with Disabilities Act (ADA), the Individuals with Disabilities’ Education Act (IDEA), the Supreme Court’s Olmstead[4] decision, none are silver bullets.  A law, a policy, a court decision alone will not make social change, though they might make a good doorstop or ornament on a shelf.   These are not solutions or answers in themselves.  They are tools we can use.  Used by a group, they can be powerful assistance in making change, but the catalyst is the group.  And the catalyst of the group is the organizer, or organizers.


Section 504 of the Rehabilitation Act of 1973 is a great example of what I am talking about.  This law, passed decades before the ADA, says entities that receive federal funds cannot discriminate against people with disabilities.  If you start to think about it, that is a very broad scope; lots of places get federal funds one way or another.  It took years and years (and an occupation of the Department of Health and Welfare offices across the nation) to get regulations written for this law and in that time many disability advocates attention was diverted to other pressing issues.  By the time the regulations were finished few people were thinking about 504 much anymore.  When I became involved in disability rights in the late 1970s a common attitude was that 504 hadn’t solved the problems yet so it must be useless.  (Some lousy court decisions made it seem even less likely to be helpful.)  People got distracted and discouraged.  504 got so rusty, disability leaders added a whole section to the ADA, called Title II, which for the most part reinforced many of the requirements already required by 504.  ADA Title II was new and shiny and people used it to push for many things already required by 504 that were not being done correctly.  Laws are tools, people are the solution.


When we see ourselves as a solution we stop looking for the magic bullet.  We stop looking to the social worker, the external “expert”, and start looking to ourselves and our group to make it right.  This is the real beginning of this organizing adventure and it is the first victory.



When I have done these trainings in the past I am often asked “so where do you find people to get involved?”  Just as there are no magic bullets to solve injustice, there are no magic beans to grow members of your group.  Cloning machines have a long way to go yet.  But once again you have more resources than you may recognize.


You don’t need an army of people to get started.  Look to the natural groups in your situation, in your community.  Friends or neighbors who share your concern can be your first recruits.  Schoolmates or co-workers are another good source of people.  If you work somewhere that brings in people with issues (like a center for independent living, a protection and advocacy agency, an area agency on aging, a medical supply shop, etc.) you have a natural constituency to start recruiting from: the folks who come to your office.  Maybe you ride the bus with other people who might be interested in similar problems; maybe you share a specialist doctor or go to the same clinic, attend the same place of worship.

Practice looking at situations and ask yourself who here might want to get involved?  There will be more on this in the Issues Chapter, but for now just think about natural groups, or places where people who share an interest might pass through.


You want doers not bitchers

The disability community has many skills, and one thing we do very well is bitch.  Folks will go on and on and on about this or that bad situation or injustice.  Challenge those people to work with you to change the problem.  Ask them who else cares about this problem.  You want real names; “everyone” is not an answer.   Everyone will not get on board, it’s often much easier and more comfortable to complain than to do something about it.  Complaining however will not solve the problem.


One or two people who do something beats 100 people who want to just bitch.  Try different people, maybe give them a few chances, but then move on; you can always try again later.  Don’t spend a lot of time focusing on people who don’t want to get started.  You don’t need that many people to do something.  I remember one time there was a guy in our local ADAPT group who went bowling with some wheelchair bowling group but the bowling alley would not get adaptive equipment for the bowlers with disabilities even though they were regulars at the alley.  The wheelchair bowling group didn’t want to complain and make waves with the owner, they would rather have their member (our ADAPT member) not be able to participate fully.  He was not happy with that solution so he asked us to get involved.  For some reason only a couple of other folks wanted to or could take this on with us so when we arrived for the picket line we had decided to do, there were only 3 of us.  We said, “hey we’re here and we might as well do something.”  So we picked out 3 of our best signs and made a picketing circle in front of the doors.  The building was big with two facilities inside – one for duck pins, the other straight pins – with many lanes in each.  It had 2 sets of automatic double doors, so our small but mighty group of 3 could not even span the whole width of the doorway at one time.  None-the-less we rolled in our circle in front of the doors and to our surprise the owner soon came out and asked incredulously “are you protesting out here?”  We told him we were and why.  He got a funny look on his face when we handed him our demands and he heard what we wanted (a piece of equipment that allowed wheelchair users with spasms or weakness to aim the ball and roll it down the alley).  But there was little argument he could afford it.  He invited us inside to talk and by the end of the conversation he was agreeing to put in permanent ramps, buy the equipment and make a couple of other improvements. 



Large group of ADAPT folks looking up

 Photo : Tom Olin

Victories bring people

Success will grow your group, people like getting involved with groups that do things, especially things that get results, and this is even more true of people who want to do things (as opposed to complaining.)  So publicize your successes and keep reaching out.  And keep thinking of people who might be pulled in and jobs they can do to get and stay involved.  Ask what they would like to do and think of how that can help your campaign.



Victories bring people

Success will grow your group, people like getting involved with groups that do things, especially things that get results, and this is even more true of people who want to do things (as opposed to complaining.)  So publicize your successes and keep reaching out.  And keep thinking of people who might be pulled in and jobs they can do to get and stay involved.  Ask what they would like to do and think of how that can help your campaign.


Leaders versus Organizers

One last point, in a lot of classic organizing you will read about leaders versus organizers.  Leaders lead the group, heading up meetings, making speeches, representing the group, etc.  Organizers support leadership and the group.  They help people serve in their various roles, keep people accountable, help do research and leg work and move forward the issues people are working on. In the disability community however, it has been my experience that these roles often get combined in the same person or persons.  I am not sure exactly why it works that way but it seems to over and over.  We often don’t have money to pay someone to organize us separate from the folks serving in other roles.  Sometimes we don’t really have enough people, or people with the right skills.  Whatever the reason leaders and organizers are often the same people.  Maybe as the movement evolves this will change, but if you find yourself having to serve double duty don’t let it bog you down, just keep looking for ways to share the work and involve others.


[1] ADAPT is the national, grassroots, disability rights group with which I work.  Started in 1983 in Denver Colorado its network has spread to over 30 state and local groups including ADAPT of Texas, with which I also work most closely.  ADAPT is no longer an acronym but we still write it with capitals because that is the way we are.

[2] Shel Trapp was a master organizer who worked with National People’s Organization and the National Training and Information Center, and numerous local community organizations.  A friend of one of the creators of ADAPT, Wade Blank, Trapp was one of the architects of the Community Reinvestment Act among many other accomplishments.

[3]There can be a whole debate about the pay issue.  We should pay for what we value, and we value more what we pay more for.  There is a lot of merit to that argument, however, ADAPT has always been an all volunteer group and we have some of the most committed, dedicated and passionate activists who have achieved amazing results.  Can you pay for passion?  I am not sure you can.  Many grassroots groups don’t have a lot of money and I believe in going with what you’ve got, at least to start with.  In addition, I have frequently found the more money an organization has the less gets done.  

[4]In this case, Olmstead v. E.W and L.C., that went to the Supreme Court, two developmentally disabled women, Lois Curtis and Elaine Wilson (L.C. and E.W.) sued the state of Georgia (Olmstead being the Commissioner of the Department of Human Resources) because they were being kept in an  institution funded by the state when they were eligible for community services.  The state even said they were able to live in the community but the state said there were long waiting lists, years and years, for the community programs so they would have to wait. The barrier to their getting out, according to Tommy Olmstead, the head of the state agency in charge of human services, was the lack of funding for the community services.  Curtis and Wilson [and their attorney Sue Jamieson] argued that the dollars the state spent to keep them in the institutions could pay for their services in the community.  The Supreme Court ruled in favor of the two women saying that unnecessary institutionalization is discrimination.  Accessed 10/11/13.

An interesting side note: the case was based on one ADAPT’s lawyer Steve Gold had won in 1995 in the Third Circuit Court of Appeals, Helen L. v.  DiDARIO.  Accessed 10/13/13.






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