A Short Guide for Adults with Tourette Syndrome

by Mitzi Waltz

When you use the health care system, try to get benefits, or assert your rights at college, work, and other parts of your life, you’ve got to use all of your persuasive power. It’s not easy, is it? Most of these systems are highly resistant to “square pegs”—if you can’t advocate for yourself effectively, they’ll try to squeeze you into the proverbial round hole regardless of whether you fit.

Self-advocacy, as the term indicates, starts within you: you’ve got to believe that you deserve equal treatment, that having TS does not make you worth less than anyone else. Letting go of self-defeating attitudes goes a long way towards giving you confidence to make a change. Identify your greatest strengths first, as these can be used to compensate for areas where you often encounter difficulty.

Good self-advocates have taken the time to think through what their preferences are when it comes to education, career plans, health care choices and the rest. When you know what you want, it’s much harder for someone else to push you in an unwelcome direction.

Of course, these preferences have to be based on knowledge, so one of the first skills for a budding self-advocate to work on is research. You need to know as much about the system you plan to navigate as possible. For example, if your target is improving your career prospects, you’ll need to find out what kinds of jobs might suit your style and interests, how you can gain the needed skills and qualifications, and what barriers you might encounter along the way. You might need to come up with ways to deflect illegal job interview questions, for instance, or learn how to get the support you need to succeed as a college student.

Obviously, you can’t find all of this information on your own, especially since much of it will relate to either legal issues or the internal procedures of agencies or employers. Your state TSA chapter is likely to have quite a few facts on file, and being a member of a local support group can do wonders for both your self-confidence and your knowledge base.

Your next step is actually putting it all into action. Many organizations are accustomed to clients and customers who don’t speak up for themselves, so don’t be surprised if you encounter some resistance. On the other hand, your goal is to succeed, not to “win”, so make sure you don’t approach things in a confrontational way. When you have to work within a system to get what you need or want, success will almost always require cooperation and even, occasionally, compromise.

Luckily, many organizations offer self-advocacy training to help you build your skills. These are usually short courses that start with a bit of “consciousness raising,” move on to legal basics, and then help you apply what you’ve learned to either hypothetical or real-life situations.

If you’re interested in taking a self-advocacy course, the best place to start your search is probably your state Protection and Advocacy (P&A) Center or Client Assistant Program (CAP.) These centers have a Federal mandate to protect the legal rights of people with disabilities, including Tourette Syndrome. Helping people become good self-advocates is part of their mandate, along with providing legal advice and even representation when it’s needed. You can find contact details for the closest P&A or CAP center at http://www.napas.org/

Finally, keep in mind that sometimes self-advocacy is not enough. When your legal rights have been violated in a serious way and your response is not greeted with respect, contact your state’s P&A Center or another legal representative for professional advice. If a problem is affecting not just you but people with Tourette syndrome or disabilities in general, an effective campaign is more likely to be a group action. In cases like these, the TSA and more general disability organizations can be good resources for discussing ideas and developing responses.

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Reviewed: 03/2006