The Importance of Self Advocacy
Guest Blog by Beth Moulam, Paralympian, Social Policy Graduate & AAC Advocate
In this guest blog Beth Moulam, Paralympian, Social Policy Graduate and AAC Advocate talks about the importance of self advocacy and provides useful tips on how to become a successful self advocate.
Communicating our needs isn’t always as easy as it sounds
Speaking up for ourselves, so we can achieve what we want in life, is a skill everyone needs to learn, not just those of us with disabilities. At its simplest level self-advocacy is being able to communicate our needs, but we all know it isn’t always as easy as it sounds.
Sometimes the way forward is getting support from another person to help us express our views and wishes, and then help us stand up for our rights. When we do this, we are using an advocate. But for them to support us they first need to know what we want.
For many people, advocacy isn’t something that just happens. It is a skill that develops through childhood, into teens and then continues in adulthood. At the core of advocating for ourselves is communication, however, being able to communicate is only a part of the picture. We also need to develop the confidence to do this.
Let me share a story that illustrates what I mean. When I was 15 my Mum could no longer get me in and out of the bath safely. Plus, I wanted more independence. The Occupational Therapist was determined I was having a wet room, which was the local policy. She didn’t listen to me, my Mum, or my Paediatrician on why I needed a bath.
I was incensed, I knew I had the right to be heard. Trying to state my case verbally, with my communication aid, clearly wasn’t working. So, I hand-wrote a letter, which if you have seen my handwriting, you would know was a labour of love. I’d said I didn’t believe I was being listened to and why. Next, I gave the reasons why a shower was unsuitable for me. Then, I stated the health and well-being benefits for me of a bath, including being able to have a greater level of independence. The result was I got heard, and I got the bath I needed.
I learned so much from this early success and I still use the same steps to achieve what I want today. My five steps are:
Being authentic means being yourself, being real, or being true to yourself, which you might think sounds simple. To be ourselves we need to be self-aware. It is about knowing who we are. This means having self-knowledge and understanding our personal identity. One of the things to understand is what we want for ourselves is not always what others might think we want. People often judge other people and make their minds up very quickly about what they think they see. The focus of this section is to think about who, and what, we are as individuals, not what others tell us we are.
Know what you want
Until we know ourselves and understand what we want then it is impossible to share this with others. Over the years we all learn lots about ourselves. I’ve been lucky that some of my learning about myself has come from structured activities. One activity I’ve talked about often is the dreams workshop I went to when I was 14. This workshop provided me with a road map for achieving my degree, becoming a Paralympian, having my own home, driving and so much more.
Other activities that have helped with knowing myself and self-advocacy were:
- Knowing my strengths and areas for improvement (never weaknesses).
- Understanding my own identity.
- Learning to reflect to make sure I stay true to myself.
This doesn’t of course happen overnight. You need to give considerable time and thought to thinking about what it is that YOU want.
Self-advocacy: Know your rights, do your research
If we know our rights this helps us manage our expectations of others, and ourselves. Here we could talk about what the United Nations Convention on the Rights of People with Disabilities says or talk about legislation. I’m simply going to say these are underpinned by hearing our voices. It still doesn’t always happen, but I am fully behind the sentiment that is often called, nothing about us, without us. Something that has been important to me for over a decade since I took part in a European Network for Independent Living leadership workshop in 2012.
Nothing about me without me
What this means is that we all have the right to be included in any, and every discussion, and decision, about us, and our lives. Like everyone else we deserve choices, and our voice needs to be heard. Whether this is a small thing or a massive life-changing event, we should expect that no one will be making any decision for us, either without our consent or active involvement in the process. This builds on knowing ourselves and being authentic about what we want.
I’ll just mention here that sometimes it can be hard when your emotions are running high, but for successful self-advocacy, there is also an expectation that you must manage yourself. Getting what I want is easier when I remain calm, polite, and speak without a passionate rant, or demonstrating anger. I’ve found it easier to do this when I have facts and evidence. It helps to have done my all-important research, and then to have a well-balanced coherent argument as to what is needed.
Self-determination and self-advocacy
This is about making things happen your way, this is where the value of planning comes in. Being self-determined includes the topics above, knowing yourself and knowing your rights. The important element next is decision-making.
From an early age it was already clear to me that whilst I wanted to live independently, I would always need help around the clock. I knew what I wanted but I was realistic that there were some things I wouldn’t be able to do myself. Frankly doing household chores are physically beyond me, but I know what standards I expect, and I can direct a personal assistant to do what I need.
Being able to make your own decisions is important. Self-advocacy is, as we said earlier, about knowing our own minds and communicating what we want. When I arrived at university I felt thrown in the deep end. Not only was I living completely independently for the first time, in a new town, studying in a new place with new academic support. Then, I was also juggling managing a full 24/7 support team.
I was determined to make it all work. But all of this together was quite overwhelming at times. I was also exhausted by the new challenges of my life. There was no one from school saying lights out, and no mum making sure my meals were on the table. Even if I awoke in the night, I had to tell people what I needed them to do. And training and managing a team of people was a whole different ball game from anything I had previously experienced. Self-advocacy takes practice.
We all have transferrable skills
The good news is every disabled person I know has already developed some of these skills for self-advocacy through experience. Because of our disabilities, we must constantly seek solutions to everyday things other people find easy. It means we are used to asking ourselves questions, dealing with change and being creative in our problem-solving. Don’t doubt your ability, you already have a head start in self-determination.
In the area of self-determination, one important thing is to both be ourselves and believe in ourselves. At 12 when my mainstream school said I couldn’t do sport, and I was unlikely to ever get any qualifications, I didn’t give up. Try and know what you want, and why. I’ve found that by having a positive mindset you can turn things that appear at first to be impossible into possibilities. If you believe in yourself then there is always a way you can achieve. We can all fulfil our own potential.
The life-changing big decisions are also important. One of my goals growing up was to be healthy, to be the best version of myself I could be. I own my disability. This is what makes me, me. But what I really didn’t like was that I was often hungry, tired, and ill, especially at school. The crunch point for me came when I was 18, and I just felt exhausted all the time. I knew I needed to act decisively. The steps to this were:
- Identifying why I always felt unwell, specifically identifying the challenges feeding myself.
- Seeking solutions and observing many adult friends were fed.
- Deciding I needed to have support to eat despite social expectations around independence.
- Getting Mum on board.
- Asking the school to support me for an initial 6 weeks to help me feel better.
- Collecting my evidence over the initial ‘trial’ period of all the benefits of being fed.
- Presenting my findings to the Paediatrician who could see the benefits and who wrote to the school and told them they had to feed me (so self-advocacy to the advocate).
- Reflecting regularly on my health and well-being and the decision. Knowing that using the Paediatrician to advocate on my behalf was in this case essential.
You’ll note that my 5 steps are not always linear, sometimes you need to tackle things in bite-sized chunks.
Communication is like a golden thread that underpins everything when it comes to advocacy. This is often the hardest thing of all. We know what we want from life, we know our rights, and we are determined to make things happen, but how?
From the examples I’ve already shared, you can see I have approached advocacy in diverse ways. It is important to find the right tool for the right situation, with the right person. I’ve written personal letters, crafted emails, and delivered presentations. I’ve tackled big issues head-on, and I’ve used intermediaries like the paediatrician to add weight to get appropriate action.
Flexible communication approaches
Other tools I’ve adopted have been:
- Blogging about an issue when I know the people I want to influence read my work.
- Brainstorming situations and creating mind maps, emotional concept boards, and lists to share with others how I feel.
- Making videos.
- Role-playing or practising situations before they happen to manage my expectations.
- Asking for topics and questions for meetings in advance to pre-prepare what I want to share.
- Writing poetry when I’m emotional that I share with key people.
There is no right or wrong way to communicate, each of us needs to find what works best for us in each different situation whether we want to advocate for ourselves or have the support of others.
Reflection around self-advocacy
I’ve been brought up to reflect every day of my life. My mum encouraged me from an early age to ask 3 questions. They were also questions that became part of my life as a sportsperson and really helped me to review my sporting performance. These 3 basic questions are. What went well? What might be improved? Then, is there anything I would change about what happened? And, they seem to work well when reflecting on my own self-advocacy.
What went well might be that I had done my research, and I had planned well what I wanted to say. I made my points, and the person I was talking to listened and then acted. What might be improved could be a range of things, from not having anticipated the questions that might be raised. Through to there might have been a better time to raise my concerns. Anything I would change about what happened again can be quite varied depending on the situation.
Being reflective is about being open-minded and willing to learn. Not being critical of yourself but realistic about what went well. Being determined and resilient. Considering what might be improved and what you might change. The upshot of this is an action list for next time of things to consider when advocating successfully for yourself and others.
Self-advocacy isn’t easy
It might feel challenging but self-advocacy can be rewarding if we can pull out the courage to take the first steps. Everyone deserves to be heard, and when we are heard our quality of life improves. My ethos is to dream big, work hard and be resilient. When you can dream about what you want, take the next step and work hard to make sure those around you know what’s on your mind. It isn’t always easy, so you might need to persevere, but you can do it.
Read more from Beth Moulam
To learn more about Beth and access her information about communication, well-being, life skills and practical support visit her website: https://www.bethmoulam.com/ or follow her on Facebook, Twitter, Instagram, LinkedIn