Disability Advocacy


Individuals with dystonia often need to become an advocate for themselves to communities, organizations, and governments. Self-advocacy is an important part of making sure you – and other individuals with dystonia – have the resources to meet your needs and are not discriminated against because of impairments or disability.

Topics in this section include:

There are many ways to become an effective self-advocate, and anyone can do it.  Before you start, clearly identify the issue you want to address. Examples include:

  • Discrimination
  • Employment
  • Health care needs
  • Housing needs
  • More services and supports

It’s important to educate yourself on the issue and the specific challenges and barriers you are facing. Understanding your rights and what services and supports can receive related to the issue will help you be a strong self-advocate. Once you understand your rights and identify the issue, you’re ready to create a self-advocacy plan.

Creating a strategic self-advocacy plan

A self-advocacy plan will help you stay organized and keep track of progress you make. Some tips for creating a strategic plan include: 

Expressing yourself in a clear, calm manner

Talking about the challenges you face can be overwhelming. It can make you feel angry, frustrated or stressed, however, if you’re communicating using angry words or a frustrated tone of voice, you won’t be an effective self-advocate. Advocacy is often difficult; it’s important to try and stay calm and communicate effectively by using your normal tone and avoid bad language as people will not listen if they feel as though they are being cornered.  

Talking about the challenges you face can be overwhelming. It can make you feel angry, frustrated or stressed. However, it is important to remember that if you’re communicating using angry words or a frustrated tone of voice, you won’t be an effective self-advocate.

Maintaining a calm demeanour and using a normal tone of voice can help prevent the perception of confrontation, thereby increasing the likelihood of being heard and understood by others.

Practice what you’re going to say to whomever you’re speaking to and ask someone to listen and provide feedback. Remember, try not to take the feedback personally. If you’re sending a letter or email, ask someone to read it for you before you send it. If you don’t have someone to read it, you can use spell check on your computer to make sure all the spelling and grammar is correct. In order to ensure effective communication, it is advisable to draft your message and revisit it after a suitable waiting period, in order to avoid any impulsive statements or unintended errors.

Identify who you need to contact about the issue

You need to advocate to the right people. This could include:

Asking for support from friends and family

Just because you are self-advocating doesn’t mean you have to do everything alone. The support of family and friends can go a long way. They can help by making calls, contributing advocacy ideas, and giving feedback. 

Take notes and keep good records

The best way to track your progress and the responses you receive is to keep accurate records. You can do this by:

  • Save all emails and letters on your computer or in a file folder.
  • Taking notes as you speak.
  • Use the voice recorder on your phone when speaking with someone in person. There are even ways to record phone calls on smartphones. Just make sure that you tell the person the call is being recorded for accurate record keeping.
  • You can also ask for notes and records and request the speaker to slow down.

The last part of a strong self-advocacy plan is to believe in yourself and what you are doing. Self-advocacy takes time and patience. Don’t get discouraged by the answers you get, and most importantly, don’t give up!

This information was found on and sourced from Brain Injury Canada, the national non-profit organization committed to advocacy, education, and awareness of brain injury. Thanks to Brain Injury Canada for allowing us to share this information.

We are grateful to our volunteers for helping others from the dystonia community advocate for themselves, and for advocating on their behalf through the work they do.

If you have any questions or challenges with advocating for yourself and your needs, kindly contact:

  • Manitoba - Sarah Anderson (info@dystoniacanada.org) Please note, DMRF Canada will re-direct messages to Sarah for her follow-up.
  • Ontario - Neil Merovitch - neil@merovitch.com
Last update: Apr 2023