Self-Advocacy and You

Speaking up, making a difference, taking pride in yourself, and preparing for
your IPP meeting
By
Paul Mansell
 Introduction

 My name is Paul Mansell, the

Consumer Information
Specialist for the San Diego
Regional Center. As such my
chief duty is to support self-
advocacy in the community.
 A Definition

Self-advocacy is confidently speaking up for yourself, your wants, needs,

hopes, and concerns. Speaking up means to speak out at meetings, to say
out loud what you think or how you feel about what is happening during a
meeting or during a time when you want to speak for yourself, not having
others speak for you or talk instead of letting you talk. It means taking
pride in yourself and your disabilities.
 Many Places & People

People speak up for themselves in many different places and with many
different people:
 At Home
 At Work, School, Day program
 At the Doctors
 With your Parents and Family
 With your Friends
 With Social Workers
 Many different topics

People speaking up about many different topics:

 Where they want to live
 What they want to do during the day
 What services are working for them or not
 How to make friends and be a part of their community
 Disability Pride
 What to do to have fun
 Speaking up to authority figures

Speaking up to authority figures like our parents, supervisors, teachers,

social workers, or police officers may be difficult. We might be afraid that
we might say something, they will get upset, and we will get into trouble.
We need to challenge these fears because authority figures need to hear
our wants, needs, hopes, and concerns if they are going to do their job.
 Making Decisions

Self-advocacy goes beyond just talking but making decisions:

Where to work, go to school, or go to day program
Where to recreate
What to buy and manage your money
How to have fun
 Self-Advocacy means a lot

Self-Advocacy means the following:

 Knowing your rights and being informed
 Following through on what you say you will do
 Matching your words with your actions
 Being honest
 Listening to others and talking with them respectfully
 Celebrating all of you, your disabilities as well as your
abilities
 Courage

Self-Advocacy takes courage:

 You might disagree with others
 You might talk about something that is very private and personal
 You might be taking a risk
 You might feel that people will judge you for what you say
 You might feel you will get into trouble
 Practice

It takes practice to become good at Self-Advocacy:

 People become more confident
 Others are more open to you speaking up
 People learn social ques
 People learn to think on their feet better
 More than one

Self-Advocacy involves more than going it alone:

 Self-Advocacy means joining together with other self-advocates
 Self-Advocates role model, support each other, and problem solve
 Self-Advocates give back to their community
 Self-Advocates work together to make systemic changes affecting a large
number of people
 Remember the golden rule

 Self-advocates need to treat others as they would like to be treated.

Treat others with respect, tolerance, and acceptance. Be ready to
forgive. Let go of the negative and embrace the positive. Be a shining
role model for others.
 Where I am coming from

 Most of my life I viewed my disabilities through the medical model. I had

a diagnosis and a prognosis, labels. I saw myself as broken, needing to be
fixed by health care professionals. They couldn’t fix me, so I was really
stuck. I was ashamed of my disabilities and I tried my best to conceal
them. It was a huge mental load to carry, and got me nowhere. My chief
ambition was to be a well behaved, compliant patient, and hide my
disabilities as much as possible if that was really possible.
 My Journey begins

 I talked to my ILS worker and told her the load I was carrying and how it
was weighing me down. I told her how accurate my view was, how I saw
doctors for my disabilities, took medicines for my disabilities, and had
blood work done for them. She listened to me and then asked me was
my view getting me anywhere. I said “no” and I began to reconsider how
I looked at my disabilities.
 My first Steps

 It is my experience that changes in long time and deeply held beliefs

don’t happen all at once. They happen in baby steps. The first was to
identify my strengths and my accomplishments. The next was to look at
my future. This was all very positive, and was easy to celebrate and take
pride in myself. This is differently abled.
 Make sense of 1st Step

 I was confused. Here I was trying to celebrate part of my life, and was
ashamed about other parts of my life. It didn’t work for me. My disability
experience is a big part of who I am and it has influenced my thoughts,
feelings, and values. I can clearly say that I would not be the same person
without my disabilities. I am definitely more patient, persistent, and
tolerant than I would otherwise have been. In this I am most grateful for.
 I take another baby-step

 Seeing the totality of who I am, led me to decide I wanted to celebrate all
of me—my strengths, abilities, accomplishments, my disabilities, and my
limitations. It may seem counter intuitive to celebrate having tonic clonic
seizures, but it became the only logical thing to do for me. All of this
change of thought and attitude, like I said, came in baby steps, but it did
come because I wanted to be authentic to myself.
 Eagle Soaring

 I was celebrating all of me and I was feeling a load was lifted from my
shoulders. People noticed this and complimented me on my change in
disposition. This made me feel even better. Then I took another step. I
decided to take pride in my disabilities as part of taking pride in my whole
self. I felt I couldn’t pick and choose what about me I had pride in. I was
proud of all of me. This made me feel truly liberated. I felt so free like an
eagle soaring in the skies.
 I invite you to join me on my journey

 The thought came to me that I should take another baby step. I have
been taking a lot of baby steps these days. The thought was to help
others celebrate their entire selves including their disabilities. I want to
free others of guilt, shame, and dependency. I believe we all have a right
to happiness, and we should not let health issues or social attitudes get
in the way of experiencing the joy and wonder of life.
 Self-Advocacy and your IPP

 The IPP document is a contract with you and/or family and regional
center for the services you receive. The document is drafted at the IPP
meeting. At the IPP meeting team members share a lot of information in
a brief amount of time. It is helpful for you to come into the meeting with
a clear mental focus on what you want to say.
 Look at your Strengths

 Begin preparing for the IPP meeting by looking at person centered

thinking. What are your strengths, the things that you do well? You might
not be used to thinking in terms of strengths. You might think in terms of
what you can’t do, but that is not very helpful. You should, as much as
possible, try to keep a positive mental focus. Examples of strengths are a
sense of humor, an out going personality, enthusiasm, or patience. If you
can’t identify your strengths, feel free to ask others for their insights on
your strengths. Some times a fresh pair of eyes can be very helpful. Then
rank your strengths in order of their importance to you.
 Focus in on your Goals

 The second step is to look at the various areas of your life and identify
the goals for your life areas. You might have goals relating to your health
and safety, school or employment, leisure or recreation, or family and
relationships. Next, ask yourself what strengths do you have to support
you to reach your goals? Then rank your goals in importance to you, with
the most important first.
 What is important to you?

 The third step is to identify what is important to you, what thing you look
forward to, and what are you most proud of. This may be a challenging
step for you as you may be used to only people telling what you should
do and if you are compliant or not. You might not feel proud about
anything in your life. They tend to be fun. Rank the items in order of
importance with the most important first.
 What is important for you?

 The fourth step is to identify what people tell you what is important for
you to do. This usually concerns health and safety. It could be getting
exercise or watching your diet. They tend to be very practical. Rank the
items in order of importance with the most important first.
 Whom do you go to get advice?

 As you start pulling all this information together, ask yourself whom
would you go to for advice when making a decision. You might want to
have these people at your IPP meeting. Whose advice means the most to
you? Rank the people in the importance their advice means to you.
Look at your successes and accomplishments

 Look at all your successes and accomplishments. What strengths did you
use to achieve them? What supports did you use to help reach them?
When things didn’t work out, what supports or strengths could you have
used to make a difference?
 Final Touches

 After visiting person centered thinking, it is important to gather all the

other information you will need for the meeting like all the health and
employment information. Remember this is your meeting. If there is
something you want to talk about organize the information to do so.
Accordingly, it may be a good idea to write an agenda for the meeting.
 Closing thought

 Life is brief. One moment it is here and the next it is gone. Let’s cherish
the here and now, and not let the trivial matters get in the way. Each
person is unique, valuable, meaningful, and worthy of respect. Let’s be
happy!
 Opening Doors

Self-Advocacy can open doors for you, help you meet new people, make
new friends, create new opportunities for you, and have fun.