How patients can advocate for themselves

Advocacy is an important and vital skill for any young adult, but young adults with cerebral palsy and other disabilities have a bit of a unique need for developing the skills. I would argue that the skills needed for self advocacy need to have the opportunity to develop in small ways when a child becomes a toddler.

For me, the roots of my advocacy were planted in the years prior to my acquiring the ability to walk. As a two- and three-year old child, I was extremely vocal in terms of very basic, immediate needs (“Mom, I need some help with my clothes.”), and I’m convinced it’s the reason that my advocacy skills in terms of academics and independent living needs have shaped up nicely in the last few years.

Luckily, as with many things, advocacy takes on many forms. Blogging is something that initially caught my eye due to the perspective I could offer for the different varieties of people I could reach using these platforms. Many times, I find myself advocating for needs to professors, friends, and even, at times, my parents and family.

So, how do you advocate for yourself? How do you teach someone to advocate for themselves?

Identify your “top three” needs and decide who needs to know them. For young children, you may want to start by telling them that the three most important things that they need are to eat, to dress, and to bathe. Teach them, for the three times a day that they should eat, at breakfast, to tell you, “Mom/Dad, I’d like a _______ and ________ for breakfast.” Give them the liberty to choose at least something during the process, and ensure that they know the people who will be providing the meals.

For students, figure out the three classes that you’ll struggle with the most. Talk with all of your professors at the beginning of the semester, but make especially sure that you stress the obstacle(s) you believe you’ll encounter during the class. Make sure that your professor is aware that you will contact them should you have further problems. This is another very important step in self-advocacy.

For professionals, your company is required to have an ADA protocol. They’re supposed to make you aware of it upon your disclosure of your disability.  If you’re prepared to disclose it during your interview, be prepared to discuss with your employer the three most important aspects of your condition that could affect the way you do your job and that may require modification.

Ensure that you have the preferred method to contact someone who can help you obtain the services you require. For parents, make sure you have your child’s teacher’s e-mail, phone number, and other contact information so that you can immediately notify them of any immediate changes in your child’s condition, any new equipment, or any new additions to your child’s IEP. During this time, also ensure that your child understands who s/he must go to for help at school. Make sure that s/he is comfortable with that person and is able to easily access hom/her during the school day.

For students, it is required by law for a university to designate an ADA officer, who is often the coordinator for disability services, at your university. This individual is responsible for providing you (and often your professors) with a copy of your accommodations that must be carried out during any sort of academic process.  I have a (signed) copy of my letter saved to my computer just in case anyone needs it throughout the semester.

For professionals, find out who your ADA officer is for your company, and let that person and your boss know the things that will help you do your job better and more efficiently. Often, people who work in hectic businesses, this may be better expressed in a letter so that he/she is given a point of reference in case there is a discrepancy later in your tenure with the company.

Find a form of advocacy that works for you. This doesn’t mean that you don’t have to be comfortable with a variety of different techniques such as e-mail, phone calls, or in-person meetings, but if you’re going to have to miss a day of work, decide on a method to contact the person that needs to know. Will you shoot them an e-mail so that they see it when they come to work? Will you call them on their way in to work so that they’re not caught by surprise when they get into work? Decide  on a method that works for you and your contacts, and stick with it so that they understand that if you e-mail them, you won’t be at work or if you leave them a message before a certain time, you won’t be at school.

Erin Breedlove is a college student with cerebral palsy who blogs at Healthy, Unwealthy, and Becoming Wise.

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