What does "Self Advocacy" mean?
Self Advocacy is when a person is able to speak up for themselves and for the things that they believe in. This person will stand up for their rights, by making choices or decisions to better improve their own lives. Becoming a self-advocate can create independence, self-confidence, and empowerment. For a person who lives with epilepsy, becoming your own self-advocate could help you be your own voice - giving you the feeling of control during many different situations (whether it be at the doctor's office, at school or at work) You may find that there are times when you would like to stand up for yourself and for your rights, but you just might not know how or what steps to take.
Advocacy can cause changes in big ways, such as changes to laws, policies or programming - but it can also create smaller changes that still may have an impact upon your life. For example, if you are able to speak up for yourself and explain some of your concerns to your doctor, your doctor may change the way they work with patients in the future; having an immediate benefit on you, but also on other people living with epilepsy as well.
According to the BC Epilepsy Society, it is important to create an "Advocacy Action Plan". The first step is developing a clear goal as to what it is that you want to achieve. This could be getting an accomodation at work or school, or being able to speak up and ask questions at your medical appointments. The next step to take is finding out who you would need to contact in order to achieve this goal. You would also want to collect any information that you can about the specific agency or organization that you would be advocating with to acheive this goal. Next, contact that particular person that you would like to present your case to. You can do this by writing them a letter or email, calling them, or meeting them in person. Once you are finished presenting your concerns to this particular person, you would want to make sure that you follow-up with them to see if there were any changes made.
Some areas that you may find yourself wanting to speak up for yourself could be within the health care system, political system, within the workplace and within the school system. For instance, self-advocacy in the medical system is important because you need to be able to effectively communicate with your health care team in order to acheive positive results for yourself. The Manitoba Institute for Patient Safety (2011) provides some helpful tips that you can use when meeting with your doctor:
• Make sure that you write down any questions that you may want to ask your doctor beforehand. Sometimes, doctor appointments can go by very quickly and already having questions written down will help you remember what you wanted to ask him/her.
The Canadian Mental Health Association (CMHA, 2008) lists a few questions that you may want to ask your doctor. Some of these questions may include:
o What is my health condition?
o What are the treatment options for this and how will it affect me?
o What are some of the side effects that this medication may cause?
o Who should I contact, if I were to have any questions or concerns? (p. 25).
• It would also be beneficial to write down your medical history and the symptoms that you are having before you see the doctor as well. Again, this will make it easier for you to share this information with your doctor during the appointment.
• It would also beneficial to make sure that you share any concerns or needs that you may have with your doctor during this time.
• Lastly, before you leave, you would want to make sure that you are clear as to what was said during the doctor’s appointment, and if you find that you are unsure of something, don’t be afraid to ask further questions for clarification.
There could be numerous reasons as to why you may want to write a letter to your MLA (Member of the Legislative Assembly - Provincial) or MP (Member of Parliament - Federal). Here are also a few tips for self-advocacy within the political system that CMHA (2008) outlined.
They suggest that you should make sure that before you contact your MLA or MP that you have contacted other professionals that could help you in your situation first. If this is unsuccessful, then it would be important to contact your MLA or MP. When wanting to contact your MLA or MP, you could either get in touch with them by setting up a meeting with them, writing a letter expressing your concerns or by calling them. Here are a few suggestions that CMHA (2008) points out when writing a letter to your MLA or MP:
• It would be important to make sure that you are addressing the right person that would be able to help with your situation and that you also have the correct name and address on the letter. Here are websites that can help you find this contact information.
o Contact Information for MLA - http://streetkey.elections.ab.ca/
o Contact Information for MP - http://www.parl.gc.ca/Parlinfo/Compilations/HouseOfCommons/MemberByPostalCode.aspx?Menu=HOC
• It would also be important that you edit and double check your letter and to make sure that there are no spelling mistakes. The letter should be short and to the point and should be around one to two pages maximum.
• Within the letter, you would also want to make sure that you leave your contact information and indicate when you would like them to reply back to you.
Another important time to self-advocate for yourself is within the workplace. Brown (2008) describes that individuals wanting to self-advocate for themselves within the workplace should follow some of these guidelines:
• The first step that should be taken is making sure that you are a productive worker within the organization that you are working in. It would be beneficial for you that your employer sees your hard work, motivation and dedication towards the company that you are working in. This will make it easier for your employer to give you the accommodations that would be needed.
• The next step would be to know what your rights are as an employee.
• You would then want to determine what accommodations that is needed or what changes that need to be made, in order for you to be comfortable within your work environment.
• It is important that you make sure that you ask the right person who is in charge that would be able to help you with these accommodations.
• The last step to take is to make sure that you follow-up on this request afterwards.
Self-advocacy is very important within schools as well. As a parent it would be important to be an advocate for your child when you are finding that they are having difficulties within their learning environment. For instance, Dawson (n.d.) suggests that parents advocating for their child in school should:
• Let the child/youth understand and acknowledge what their challenges or learning difficulties are within the classroom.
• Another important aspect is preparing your child to learn how to properly communicate with others about their concerns. In order to help your child with this process, you could help him/her make notes about their concerns or even role play with them.
• Another important aspect would be for a parent to help their child be able to identify his/her support systems. It would be important for them to identify which individuals within their life that they feel comfortable with in sharing any concerns that they may have. For example, this person could be a parent or relative, a teacher, or a school counsellor or school administrator.
• It would also be important for parents to meet with teachers to discuss any concerns that they may have about their child and the learning challenges that they may have. This would also be a good time for parents to encourage their teen in high school to set up meetings with his/her teacher by themselves. This can then create self-advocacy within your teen and it would also give them some independence.
Overall, some of these recommendations can be a useful guideline on how you can start advocating for yourself within the hospital, the political system, within the workplace and within the school. Being able to stand up for yourself is very important and by knowing what it is that you want or need to change, while also being organized, and getting the right support that you need, would lead you to accomplishing your goals.
Mount Royal University
Social Work Diploma Practicum Student
April 30, 2014
References & Resources
Canadian Mental Health Association. (2008). Self-Advocacy guide. Retrieved from http://calgary.cmha.ca/files/2012/07/Self-Advocacy-Guide-08.pdf
Manitoba Institute for Patient Safety. (2011). 5. Talk with your doctor. Retrieved from http://www.safetoask.ca/safetoolkit/resource5.html
Brown, S. D. (2008). Tips for self-advocacy in the workplace. LD Online. Retrieved from http://www.ldonline.org/article/6011/
Dawson, J. (n.d.). Self-advocacy: A valuable skill for your teenager with LD. Retrieved from http://www.greatschools.org/special-education/health/797-self-advocacy-teenager-with-ld.gs