Advocating for one’s family or one’s self happens on a daily basis. “Advocacy” can mean many things, but in general, it refers to recognizing something is not right and taking action. Another name for it could be assertiveness. Advocacy simply involves speaking and acting on behalf of yourself or others (Disability Rights Wisconsin, 2007). We may negotiate with other individuals, businesses, organizations, government agencies to be treated fairly.
Advocacy can be applied in big situations such as being discriminated against at work, being denied insurance, or being evicted from home. It can also be applied to day to day situations and relationships, such as someone cutting in front of you in line at a store or receiving poor customer service.
Successful advocates communicate their needs while understanding someone else’s perspective. Some people are naturally good at communicating their needs, while others need practice.
Some examples of good advocacy:
- Saying no to something that makes you uncomfortable.
- Expecting fair treatment.
- Having your opinions heard.
- Requesting assistance or accommodations.
- Speaking politely but firmly.
- Requesting explanations.
Some examples of bad advocacy:
- Lying about something that did not happen.
- Swearing when communicating.
- Trying to force someone to do something they’re not comfortable doing.
Being a successful advocate involves:
Knowing your rights. There are several laws protecting your rights in Ontario and Canada. See below for a list.
- Being clear about what you are asking for. Have an outcome in mind.
- Staying calm and respectful.
- Talking to others. Seek out others who have dealt with your situation before. This may mean talking to your friends, social network, family members, or contacting helpful organizations.
- Making your case. Think about what should be included, what happened, why you think it’s wrong, how it made you feel and what you would like to see happen.
- Practice or rehearse stating your needs and expectations.
- Responding inappropriately to both your emotions and the emotions of person you are communicating with. Maintain a rational, thoughtful and calm approach.
- Personal attacks on others.
Remember, if you don’t succeed in achieving your goals at first, you can explore different pathways that may be available, such as:
- Appealing a decision.
- Filing a complaint.
- Asking to speak to someone at a higher management level or contacting head office.
- Contacting your Member of Provincial Parliament (MPP) or Member of Parliament (MP) or city councillor.
- Asking someone you trust to go with you as support or to help you remember what is said.
- Taking legal measures Resources to Help with Legal and Financial Issues for Self-Advocates and Caregivers
Knowing Your Legal Rights:
Advocacy is typically based on rights. These rights may be part of an ethical moral code; and have been written into policy or law. These documents will help you understand what your legal rights are:
Bill 118 (2005) Accessibility for Ontarians with Disability Act (AODA).
An Act respecting the development, implementation and enforcement of standards relating to accessibility with respect to goods, services, facilities, employment, accommodation, buildings and all other things specified in the Act for persons with disabilities. https://www.ola.org/en/legislative-business/bills/parliament-38/session-1/bill-118
Bill 125 (2001) Ontarians with Disabilities Act (ODA)
Public sector organizations including Government ministries, municipalities, hospitals, public transportation organizations, school boards, colleges and universities are required to continue to prepare and make public annual accessibility plans, as the legal obligations under the Ontarians with Disabilities Act, 2001 remain in force until such time that the Act is repealed. https://www.ontario.ca/laws/statute/01o32
The Ontario Human Rights Commission has a good brochure concerning rights: http://www.ohrc.on.ca/en/disability-and-human-rights-brochure-2016
Choosing to disclose your disability:
There may be times when sharing your diagnosis will help the other party understand your point of view. You may not have to choose to tell them everything about your disability. It might be as simple as saying what barrier you are facing or accommodation you need regarding a particular situation. There are many articles that speak to the decision to inform your employer of a diagnosis. In post-secondary education, connecting with the Accessibility Services at the college or university will enable you to access supports that you will not be able to get otherwise.
If you have a long-standing relationship with a business, such as a bank or hair dresser; or it is difficult to explain what you need (e.g., added anxiety or sensory issues), you might consider sharing your diagnosis in order to be an effective advocate and get your needs met.
Another way to become a better advocate is to be prepared for situations that you frequently find yourself in. For instance, a long haul trucker on the spectrum who struggles with anxiety around authority figures prepared a card explaining his diagnosis to police and border services in case he is pulled over. Another young adult on the spectrum who struggles with the sensation of newly cut hair on his skin explains at the beginning to his hair dresser that he needs his neck to be covered by a towel and the cut hair to be blown away as soon as possible. By thinking about what their needs are and what information the other person needs, these individuals increased the possibility of having their needs understood and accommodated.
More Information About Being a Successful Advocate:
http://www.brainline.org/downloads/PDFs/Advocacy%20Tool%20Kit_2007.pdf Excellent tool kit created by Disability Rights Wisconsin but is Wisconsin/USA specific in its laws and references.
http://www.disabilityrightswa.org/advocacy-news/successful-advocacy-has-common-characteristics-many-approaches What is advocacy by Disability Rights Washington
https://www.mha-em.org/im-looking-for/those-living-with-mental-illness/effectively-advocating-for-yourself/278-steps-to-being-a-self-advocate Great step by step plans for advocating. Mental Health Association of Eastern Missouri
https://www.autismspeaks.org/tool-kit-excerpt/basic-advocacy-skills-step-step Tips on self-advocacy with examples by Autism Speaks.
Provincial legal organization that specializes in law as it relates to Ontarians with disabilities. Has some good resources regarding disability and the law: http://www.archdisabilitylaw.ca/
Developing Advocacy Skills in Youth and Adults with ASD
http://autismasperger.net/writings_self_advocacy.htm article by Stephen Shore describing pathway from involving students in own IEP to being able to self-advocate as adults
https://teachingselfadvocacy.wordpress.com/teaching-self-advocacy-skills/ Teaching self-advocacy to students. Lots of good info for this piece
https://www.canlearnsociety.ca/resources/adhd-ld-resources/teaching-tools-for-ld-adhd/self-advocacy/ Teaching self-advocacy to middle school and high school students with learning disabilities from the CanLEARN Society. Includes worksheets.
Worksheets/Toolkits on Advocacy
http://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Paper-Self-Advocacy-Worksheet.pdf Worksheets on self-advocacy, applicable to many situations.
Resources from Autism Ontario for families and caregivers on school related issues: http://www.autismontario.com/client/aso/ao.nsf/web/Education+Advocacy+Resources?OpenDocument
https://www.amazon.ca/gp/product/1931282587/ref=ox_sc_act_title_1?smid=A1DT36E5O0B045&psc=1 Edited by Stephen Shore this book helps people with autism to effectively self-advocate in their pursuit of independent, productive, and fulfilling lives. This book speaks about the twin issues of self-advocacy and disclosure for people with autism.