Developing Self-Advocacy Skills

Self-advocacy is being able to speak up for yourself about things that are important to you.

Autonomy is when you choose what you do with your life, make your own decisions and are able to have your own personality and life goals.

Feeling able to make your voice heard (self-advocacy) and having the confidence and opportunity to make choices about the way you live your life (autonomy), are important skills to develop in order to build independence. By developing these skills, you may find that your participation in society is positively impacted. How you perceive your own abilities can have a big impact on what opportunities you put yourself forward for. By building your confidence levels and focusing on your strengths, the way you engage with the world (in social activities, work or education) could be positively impacted.

Remember: You are the expert on your own life.

Self-advocacy is important during the transition period from child to adult healthcare too. By taking some advice from the “Building Independence Skills” section, you will also be building self-advocacy skills. For example, by taking charge of your medical appointments and asking your own questions, you are making your own voice and needs heard. Researchers have found that during the transition period, often young people with Cerebral Palsy need to self-advocate in order to get what they need (5) but sometimes it’s hard to know what you need if you haven’t been given any information on what is available. Asking questions from medical professionals or other adults with CP, discussing your needs with loved ones, or even doing your own research could help you to know what to ask for help with.

Remember: You are the expert on your own life.

Have you heard the phrase “Nothing about us without us”? It means that decisions made about the lives of disabled people should be made with the people they affect. This applies to your life also. Decisions about healthcare, housing, further education and training, work and social activities should all be made with you and not just for you. By raising your own voice in these decisions, you are self-advocating for what you want and need. Your access to the world around you should be on an equal basis with others who do not have CP, and this is a basic human right highlighted in the United Nation’s CRPD.

Read from the perspective of a middle-aged woman with Cerebral Palsy, Karin, who shares her top tips on how to build self-advocacy.

Here is an article on ‘Nothing About Us Without Us’.

References

  1. https://studycorgi.com/blog/self-advocacy-for-students/
  2. https://www.disabilityrightsca.org/legislation/principles-personal-autonomy#:~:text=Disability%20Rights%20California%20(DRC)%20furthers,and%20not%20be%20unreasonably%20limited.
  3. Schmidt AK, Van Gorp M, Van Wely L, et al. Autonomy in participation in cerebral palsy from childhood to adulthood. Dev Med Child Neurol. 2020;62(3):363-371.
  4. Bartolac A, Jokic CS. Understanding the everyday experience of persons with physical disabilities: Building a model of social and occupational participation. J Occup Sci. 2019;26(3):408-425.
  5. Manikandan, M., Kerr, C., Lavelle, G., Walsh, M., Walsh, A. & Ryan, J.M. (2021) ‘Health service use among adults with cerebral palsy: a mixed-methods systematic review’, Developmental Medicine and Child Neurology, 64, pp. 429-446.
  6. Convention on the Rights of Persons with Disabilities. United Nations General Assembly 13 December 2006, A/RES/61/106, Annex I.

Rio Boothe is 19, studying Sport Business at Liverpool John Moores University. He is also an aspiring Paralympian. He tells us his story.

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Scarlett Murray is a 22 year-old mother of one, and a talented writer who blogs about her experiences of living with Cerebral Palsy. Her form of CP is left-sided hemiphlegia. She tells us her story.

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Young woman with little girl (Scarlett Murray and daughter)

Clive Gilbert is a leading policy expert on assistive technology for disabled people, drawing in part, on his own experiences living with Cerebral Palsy. He tells us his story.

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Man using assistive technology (Clive Gilbert)