Empowering Leadership: A Systems Change Guide for Autistic College Students and Those with Other Disabilities

Introduction

By Ari Ne’eman

College campuses and higher-education settings have a long history as sites of community-building, resistance, and social change. As post-secondary students, you are powerful and empowered self- advocates. You are not future-activists, would-be activists, or activists-in-training—you are activists right now and valued members of the larger disability advocacy community.

This handbook gives you the tools you need to become a more effective self-advocate, activist, and disability rights advocate. In this handbook, you will find in-depth information on establishing a disability advocacy group at your school, organizing meetings and events, navigating disability and mental health services, and ensuring that disabled students have a voice on campus.

For the past several decades, the disability rights movement has been promoting the social model of disability and advancing the causes of dignity, self-determination, and community integration for all people with all disabilities. As self-advocates, we join our allies across various other communities to advance the rights of all disabled people, and we focus on addressing issues that specifically affect the disability community, such as the lack of community-based supports and services for disabled adults, damaging rhetoric which paints disability as a disease and a burden, and attaining equal access to educational and employment opportunities.

An important part of our work as self-advocates is also the recognition and celebration of disability culture. While attaining the support, accommodations, and respect that we need to thrive within our communities is tremendously important, it is only one aspect of disability activism. As disability activists, we are also members of vibrant communities with our own special customs, vocabulary, and social practices. Disability culture remains dynamic and diverse as more people come together to share and contribute to it. This is an important function of disability-rights groups on college campuses and in other academic environments: bringing individuals together to find their voice, connect with each other, and connect with their larger community.

The lifeblood of national advocacy movements is in the effort and dedication of individual activists working together to reach out to their local communities. Often the process of feeling empowered to talk back to and change one's larger community means carving out safe spaces and firmly requesting accommodation in spaces designed by and for non-disabled people. Safe spaces for the disability community allow disabled people to connect with each other beyond the gaze and interference of non-disabled bystanders. By definition they provide a space in which each individual can feel totally secure and in which everyone can regroup and recharge from inaccessible spaces.

Making spaces not designed with disability in mind fundamentally safe and comfortable for disabled people may require accommodations that may never occur to non-disabled or neurotypical people. Among the wealth of content in this handbook, we have provided information on how to determine the difference between reasonable and unreasonable accommodations and how to request reasonable accommodation in order to make the most of your educational experience and effectively share disability culture and activism on your campus.

The Autistic Self Advocacy Network is honored to join The Daniel Jordan Fiddle Foundation in bringing you this resource and equipping the next generation of leaders in the disability rights movement. This handbook is a clear, detailed guide to help you build a strong community of disability activists at your school, practice effective self-advocacy, and ensure that the legacy of disability advocacy continues long after you have graduated.

On behalf of the Autistic Self Advocacy Network and The Daniel Jordan Fiddle Foundation, we wish you the best of luck as you continue to grow as activists and self-advocates.

Disability Student Groups and Event Planning

By Allegra Stout

Since I started college, campus disability rights organizing has been one of my most rewarding and enduring activities. As a student with learning disabilities and a history of chronic illness, it has been deeply fulfilling to connect with other disabled students and allies and to work together to create change. In this section, I will share some of the lessons I have learned during three and a half years of founding, building up, leading, and ensuring the sustainability of a disability rights group on a small, private liberal arts campus. (Although my experiences have been in a cross-disability context, most of the lessons I have learned are equally applicable to groups specifically for autistic students or students with another particular disability.)

Starting a group

You may be lucky enough to be at a college that already has a student group focused on disability rights or whatever other area you have in mind. If not, here are some things to consider as you think about starting a group:

Why do you want to have a disability-focused student group? What are your goals, and are certain ones more important or urgent than others? For example, when I was a first-year student, I felt very isolated as a disabled student, because I couldn’t find anyone talking about disability, except from the perspectives of volunteer work or, in classes, medical issues. For me, then, developing a sense of disability community was a major goal. Other goals might include increasing understanding of disability issues among students, faculty, and/or staff; improving university policies affecting disabled students; or increasing various types of accessibility around campus. Being clear about your goals will help you communicate with others about the new group.

How can you reach out to potential members? Think creatively about ways to find students who might be interested. You might already have friends or classmates you know to be interested in disability issues. Perhaps your disability services provider would be willing to send an email to students registered with her or his office. You can post fliers around campus and use whatever online tools are available for publicizing student activities. Reaching out to other student groups can also be helpful, both to find new members for your group and to begin developing lasting relationships.

What steps are necessary to officially start a new student group? This varies widely depending on campus policies. At some colleges, new groups need a list of members and a faculty advisor, while at others it’s as simple as filling out an online form. Check with your office of student life or student activities, or ask students with more experience to get the details.

Depending on your particular circumstances, including campus policies and whether you are starting out alone or already have a few interested people, you might officially create a group and then start recruitment and meetings, or you might try to get more people involved before formalizing things. Either way, here are some things to think about as your group begins to get off the ground:

Naming your group: The name of your group is important not just because it’s often the first thing outsiders encounter, but also because it can convey important information about your values, political beliefs, and goals. For example, my student group is called Wesleyan Students for Disability Rights. This might seem benign, but it actually has some important implications. First, the group is focused on Wesleyan Students. We have had several members from the surrounding community who are not Wesleyan students, but we’ve decided to keep our primary focus within the campus. Second, we are comfortable talking frankly about Disability. At one point some students within the group suggested that a phrase like Differently Abled might be better, but we all discussed it and decided that we want to align ourselves with the broader disability rights movement.

When choosing your name and writing any other materials, another important issue of language is whether to say students with disabilities or disabled students, or to use some combination of the two, or another phrase entirely. (If you are running a disability- specific group, you may still run into similar issues, such as Autistic students, autistic students, or students with autism.") Although the differences between these phrases might seem subtle, they are often extremely important to people.

Before using any of these phrases in an official capacity (such as in the group name), it might be helpful to gather a few interested students to talk about the differences and what you all call yourselves. Try to reach an agreement about what’s best for the group (e.g. picking one because most people use it or to make a political point, or alternating back and forth.)

Leadership: Nothing about us without us is one of the most famous slogans of the disability rights movement. It means that discussions and work about disability need to be led by disabled people. Non-disabled allies can sometimes play important roles, but disabled people need to set the agenda for matters concerning us. As you start your group and recruit more members, you and the other people involved will need to consider how and to what extent your group will uphold this principle.

One factor to consider is that your college may have policies requiring that student groups, or even leadership roles, be open to all students. This could mean that restricting leadership to disabled students might be considered reverse discrimination. If you are concerned about this, check with your office of student life or student activities.

Also, especially when groups have very few people, you may decide that it doesn’t make sense to exclude someone from a leadership role because of disability status. Alternatively, you and your other group members may feel that it’s extremely important disabled students lead the group.

As with choosing your name and other language use, this is a good opportunity for a group discussion about your values, political beliefs, and goals, in order to determine what is best for the group. I would caution, however, that if non-disabled students are given leadership roles within the group, it is very important that they be aware of their roles as allies and that they have a good understanding of their non-disabled privilege.

Group structure: As your group gets off the ground, you and the other people involved will need to make decisions about how you will operate and get things done. A lot of this depends on circumstances on your particular campus, such as whether it’s residential or commuter, small or large, and overly bureaucratic or more supportive of free-form student organizing. It can be helpful to join other, more established groups on campus in order to see what works and doesn’t and how student groups generally operate at your school.

Things to consider include:

Meetings: Many student groups find that one meeting at the same time every week works well, but figure out what’s best for you. You might consider combinations of online or in-person meetings, or having some meetings for planning systems change campaigns and others for getting to know each and talking about your lives.

Leadership structure: Some student groups have a formal structure, with officers like the president, vice-president, treasurer, and so on. Others share leadership, with roles assigned informally or on a rotating basis. This partly depends on the size of your group, as it may be easier to maintain informal, non-hierarchical structures with small groups.

Making decisions: It helps to have a sense of how your group will proceed when it’s time to decide on priorities, next steps, or responding to incidents on campus. You might discuss issues and then have a majority-rules vote. In my experience, consensus-based decision-making, in which members consider everyone’s opinion and try to come to an agreement that works for everyone, has been an effective way of making sure that everyone feels represented and valued.

Setting an Agenda

By Elizabeth Boresow

It is a good idea to have an agenda prepared before you go into each meeting. You may need a specific agenda that addresses a lot of points or you may just need a general agenda. You must consider what your members want in a group if you are going to keep those members!

In order to keep the group enjoyable and productive, it may be nice to have a two-fold purpose in the group. My organization has two types of meetings: advocacy meetings and social meetings. Social meetings require less of an agenda. A social agenda might include introductions, an activity, and then announcements about upcoming activities or the next meeting. The focus is on interactions and having fun! Advocacy meetings are the type of meetings that require a more formal agenda. There should still be introductions at the start and announcements about upcoming activities and meetings at the end, but what happens in between them is more structured.

You should consider the make-up of your organization when you set an agenda. Do you have all freshmen or all graduate students or something in between? Will you have others in attendance, such as administration, faculty or staff members, guest speakers, or reporters present?

Your freshmen may want help with the transition to college. This could include leading discussions or role-playing sessions on talking to professors, working with the Disability Resources office, navigating the University web site, or figuring out the wheelchair-accessible routes on campus. You could put a time in the meeting for younger members (or older students with recently acquired disabilities) to ask questions of your more experienced members.

Depending on your University, the group may want to make improving campus accessibility a priority (this could be either physical accessibility or policy accessibility or both). See chapter three for more information on how to make this happen. In a meeting, you could put in an item (topic for discussion) on the barriers your members are experiencing and if you would like to do something to improve the system.

Another area for discussion in a meeting, if you so choose, is collaborative planning. There may be other student groups you could team up with to host events. You may want to host events on your own. Have a discussion about the kind of events you would like to host and who you might want to host them with. For example, you could host a self-defense class with an instructor who is willing to work with people of all abilities. Another sort of collaboration is for similar goals. Our organization has teamed