How I See It: How to use your voice
It takes a lot of courage to speak out for what you believe is important. I’ve learned it is definitely something most of us need to practice more because if not us, who? Whether it be at work, at school, on public transport, or at the hospital. If you want something to change – you need to be that voice.
You need to decide what you want to speak up about and how you are going to do it. Stephen Hawking once said that you must concentrate on the things your disability doesn’t prevent you from doing well, and don’t regret the things it interferes with. I believe we all have the power to do something positive. Don’t ever be afraid to raise your voice, especially for honesty and compassion.
I get a million ideas in my head all the time. I am constantly talking to my family, “Well what if I do this?”. I want so badly to influence, to change, and to be a strong voice. I believe I was given this life not to suffer, but to inspire.
This is perhaps the strongest tool you will ever have. Every single person (well, almost) is reachable on social media. You have access to all kinds of connections through social media and not to mention the audience is huge.
You can do anything from creating a blog, posting videos on YouTube, or capturing your life through Instagram. I am a terrible social media user because I would rather be reading or writing in one of my notebooks, than sitting in front of a screen. I wish I could learn to love it because it is such a powerful tool if you know how to use it.
If you don’t want to do this alone (because let’s be honest, we all love comfort over risk), it is easier to create a team. If you can get a group together and brainstorm ideas, amazing things do happen. I remember working on group projects in school and all the different perspectives and angles that I got exposed to I could never think up myself. So find a family member, a friend, or even a stranger that has the same vision as you, and create an idea!
One thing I have always dreamed of doing is creating my own not-for-profit organization. Since me and my sister both suffer from the same disorder, I always wanted to create something for the both of us. Something that will long outlive our lives and hopefully one day, find a cure. Because that’s all I want – for all of us. A cure.
We all have different opinions and something we all stand for. My advice would be do some research and don’t be afraid to implement change. I get that we are all busy – working, school, doctor appointments, sick days – but this is your life. Live for it.
If you want something badly enough, you will change. If you just want relief, then you will learn to live with all that is around you. But if you really want change – you will learn to fight for it.
Don’t ever stop
Starting a blog was always a dream of mine and I did that. But now that I have that done, what’s my next step? You always have to have a series. You can’t just say, “Oh I want to be a teacher”. You have an entire life ahead of you; use it. Don’t just stop there.
I definitely want to keep learning and I want to create something meaningful, something hopeful. The first step is always the hardest. After that, I think you find your way. Frankly, I think it finds you.
If you want change you can direct it towards government policies, laws, and procedures. If you want to reach out to your community or government, chances are there is already a team of individuals who are working for you. There are many community and social services out there that will encourage and inspire you. There are three different ways to go about advocacy: You can speak on your own, you can encourage others to speak for you, or you can empower others and let them know they have the right to speak.
Once you develop your team and share information and resources, you need to expand your base and support to those directly affected by the problems and convince others of the issues that are important to them as well. Raising public awareness to change public opinion is very important because this will get the governments attention.
And remember this: The best person to advocate for the rights of persons with disabilities is the persons with the disabilities.
The internet is a really great and useful tool. Anything you want to know, you can find with just a simple click. I was able to research a little and found organizations like “Council of Canadians with Disabilities”, which provides support, promotion, and accessibility, among many other things for persons with disabilities. “Champlainhealthline.ca” is a group of volunteers that support and protect the rights and interests of people with disabilities and advocate on their behalf. You can also find plenty of government and legal resources on “Arch Disability Law Centre”. Or right here at Muscular Dystrophy Canada.
Step by Step
- Define your goal. What needs to change and who do you need to approach.
- Learn who your audience is. Is it the government? Health authorities? The general public?
- Create your message. Always make sure you are sending a positive message and that you are creating a clear and simple picture of the problem. Use evidence, use resources, and do your research. You also want to appeal to your audience’s self-interest and make a strong case.
- Identify who your “messenger” is and how they are going to reach out to the public. It can be through advertisements, media stories, local events, awareness campaigns, etc.
- Plan your next step(s). Create a strategic plan by setting out clear steps, creating timelines, assigning tasks on who needs to do what and when and where, communicate, and always remember your long term goal. Never lose sight of it.
Overall my advice to you is to always use your voice. Don’t ever silence it. I want to be able to hear it, I want you to be able to hear it. There is no right or wrong way to use your voice. You have to create your own “game plan” and if you can’t get from step 1 to step 2, find a new way. As persons with disabilities, we are masters at finding new ways to do things and adapt. Our entire lives we are evolving and changing and it becomes second nature. So discard what doesn’t work and build on what does. Re-evaluate on new opportunities and communicate changes as much as you can.
“I concluded that if I could only nudge the world a little bit, maybe that would be enough.” ― Jacqueline Novogratz
Ivana was born in Sanski Most, Bosnia & Herzegovina but moved to Canada at the age of 3. She was diagnosed with LGMD a few years ago and it has forever changed her life. She is a regular contributor and her blogs will be everything she has learned along the way and what she continues to learn today. Read Ivana’s personal blog at: www.loveivana.com