What’s your why
Why do you get up in the morning and do things that are important to you?
For a long time, to be honest, I didn't know my why. All I knew was that I had a job with a paycheck that could help me survive from day to day. But then, it was clear that my belief in advocacy and my belief in myself were big drivers in my why, and as I grew older faith also played a big part in my why. I've always believed from a young age to push the envelope. Keep in mind, I am 54 now, and those who came before me in advocacy taught me how to just be me. I didn't know who they were back then, but as I learned from them, I got to know some of them as peers. It’s important that you get to know your other peers and that you are not alone in whatever you are fighting for.
In today's climate, we have a lot of things to fight for. I'm not going to get into my political views on things, I'm just going to say don't sit back on the sidelines and wait for somebody to tell you what you should fight for. If there's some injustice in your life that is happening, don't wait for somebody else to speak up for you.
Yes, I have made mistakes in my life, and I continue to make more every day and it's okay because that's part of life. We should not be judged for the mistakes we make, but rather how we can make things better for ourselves and for others. So, I'm just asking you to think about what is your why, and don't wait for somebody else to speak up for you, or else it could be too late.
Your allegiance needs to be to yourself and those you know, not so much the agencies that give you services. That's what the system is set up for, to provide you with the services to lead that richer life that you want, but that is another story for another time. I'm still waiting for that. If you're going to do something for yourself or for others you know, you need to find your why. Also ask yourself if not now than when, if not you then who.
There comes a time in everyone's life when they have to take a leap of faith and find their own way in life. The leaders you look up to will guide you, but they shouldn't be doing for you because that doesn't help you if they are not around anymore. Case in point, Judy Heumann from the documentary “Crip Camp” was a great friend and mentor to me, and she is not around anymore but I take a lot of what we talked about and use it in my daily life.
Life isn’t easy, and obstacles that are put in our way can be very hard to overcome, especially the way society looks at people with disabilities today. Like we all belong somewhere to be “safe and happy”. The place where you belong is where you choose to be. You can make that choice with trusted people in your life.
I'm not saying advocacy is easy, but it would be good if we all worked together to make the system work for all of us. To be honest, I am very tired of hearing how the system has done me wrong from other people. My answer now is, what are you going to do for yourself to change it? And believe me, I have asked myself that question every day. I don't have the answer, but I just keep pushing because it's something I feel I need to do. I just don't give up and say “it is what it is” because that statement, if you say it to yourself, doesn't create change. Like I said earlier, my faith now drives my why. If you don't have a religious belief, that's fine, but you need to believe in yourself most of all when it comes to the life you want. I will continue to do what I feel is right, even though it may ruffle some feathers. That's what we as advocates are supposed to do, and not just be happy-go-lucky billable units. So, my call to all of you is to step up, step out, and create change.
