Back Becoming an advocate

Becoming a self-advocate can help you to feel empowered, self-confident and independent. By speaking up for yourself and standing up for what you believe in, you can find a feeling of control when you practice self-advocacy. Whether it be in the doctor’s office, at work, at school, or in the community, it can be empowering to stand up for your rights and make choices that benefit your own life, as well as others with epilepsy.

Creating an Advocacy Action Plan can be a great place to start.

  • Start by choosing a clear goal (e.g., asking more questions at medical appointments).
  • Identify what information you’ll need, and who you’ll need to contact, to meet this goal.
  • Contact a person you would like to present your case to. Don’t forget to follow up with them afterwards to see if changes have been made.

You may find yourself wanting to speak up and defend your rights in the health care or political system, workplace or at school.

Within the health care system, becoming a self-advocate can help you to effectively communicate with your health care team. Remembering to track your seizure activity, medications, and any side effects that you may experience can improve the transparency of your condition, and allows for more productive and helpful office visits. Bringing in a list of questions can also be a great way to make the most of your appointments and get the answers you need about your condition.

If you are facing challenges within the political system, you can consider contacting your MLA, MPP or MP. However, make sure that you’ve already made efforts to contact other professionals that may be able to assist with your situation before contacting your MLA, MPP or MP. If you are choosing to write a letter, you should make sure you:

  • Have the correct name and address for the person you are contacting
  • Keep the letter short and to the point (2 pages maximum), with no spelling mistakes
  • Include your contact information and when you would like to hear back from them

The workplace can also be an important place to practice self-advocacy. If you are a dedicated, motivated, hard worker, it will be easier to approach your employer about requesting certain accommodations. You should first make sure that you know your rights as an employee, and then determine what accommodations or changes you would require to feel more comfortable in the workplace. It’s important that you have this conversation with the right person – someone who is in charge and who will be able to make the change. You can follow up on the conversation afterwards to see how they are planning to address your request.

Advocacy can also be important within the school system. Parents who have children with epilepsy can advocate for their child’s rights if they find their child is having difficulty within the learning environment. This can be done by:

  • Helping your child to acknowledge what challenges they are facing
  • Assisting your child in communicating their concerns with others. This could mean writing down their concerns and even practicing discussing these concerns with others, through role-play.
  • Working with your child to identify what support is available to them within the school system. This could include finding support groups, or supportive individuals with whom they feel comfortable discussing their concerns.
  • Discussing any concerns with their teacher during a parent-teacher meeting. High school students can take the initiative of setting up these meetings themselves, which can also foster a sense of self-advocacy and independence.