I am a simple country girl. I love simple things. I love sunshine and rainbows, baby giggles and dimples, pretty flowers and birds singing, crazy kids and cute animals, HGTV and Food Network, chocolate and herbal tea. Just simple pleasures.
When you get in the world of advocacy, it is easy to speak of what we know – our life with a disability!! But, many times, disability advocacy involves a lot of complicated things. Writing or sponsoring bills is complicated. Speaking to our representatives can feel overwhelming and intimidating. Being the only voice many times to make change can be lonely and feel non-rewarding.
Advocating can be personal like telling the manager that the bathroom door is hung wrong or that the handicap parking is being abused. It can be local as we advocate for broken sidewalks to be fixed or bus lifts to be maintenanced. Or it can be national as we work with legislation that deals with decisions that will affect all people with disabilities.
Entering the world of advocacy does not need to be complicated. So, let’s break some things down and let me give you some tips to help get you busy!
How To Get Your Head In the Game:
- Remember that disability issues, on any level, affect us. When they do affect us negatively, we will not like it and will complain! We have NO right to complain, if we are not willing to be a voice to help make a change.
- Remember that your voice for change does not only affect you. You are representing a large demographic of people who have disabilities. Have the courage to speak not just for yourself but for others as well.
- Don’t get discouraged if you do not see immediate results. We are reaping today the results of advocacy 25 years ago. Our voices today may not see the change we want immediately, but it will help shape the future.
- Our lives have value. We are not asking for special favors. We are asking for equal favors. We are just talking to people – just like us. Even those who hold high offices are just people. We must appeal as a human to another human.
- Speak nice.
It is so easy to get frustrated and want results, but rudeness or being harsh will only turn them off to our message. We must say the right thing the right way. Being confident and passionate does not mean being cocky and pushy. Keep the balance.
- Speak plainly.
Make our requests very simple. We do not have to explain a million reasons. Be clear with what the issue is, and offer a solution. They do not live in our world so do not leave them hanging how to fix it. I was recently in Washington DC and they had a very nice accessible bathroom except the door to the handicap stall was hung where it swung into the stall which prevented me from being able to close the door. I asked for the head of that department, told them how nice there restroom was and how I appreciated the electronic doors (speaking nice), informed them that I was not able to use their restroom because the door was hung wrong and all that needed to be done was for maintenance to hang it the opposite direction. I thanked them and a work order was issued and completed that same day. If I had only called and complained, they may not have even understood what needed to be changed. Give them a solution and not just a problem.
- Speak their language.
The truth is that unless they have a disability or a very close family member or friend that has a disability, they will not understand our language. When we are trying to convey our message to them, we must get into their world and create scenarios they will understand so that they will understand our world.
For example, while advocating for a state parenting bill, I looked at their physical features and asked if they would be okay if someone took their children because of their freckles…or black hair…or mustache…or the glasses they wore. Immediately they answer, “NO!!” Now I know I have them. I then explain that people with disabilities can abuse their children, but children should be taken because of abuse – not a disability. They understand that.
In Washington DC, we were working on several issues and I would give them scenarios to help them understand what we were talking about.
For the bill that asks Congress to protect our access to our essential complex rehab components, I asked them what would happen if the DC metro shut down for a day or two. They would look shocked and say it would be awful! They knew right then that their bread and butter would be shut down also. I made a point to continue that logic and that it would greatly affect their work. I shared that this is what happens when we do not have the accessories that are needed to keep our lives going.
For the bill that asks for a separate category for our complex rehab technology to be recognized under Medicare, I asked them to pretend that they were in an accident and lost their leg. Then, I told them that I would take them to the room where 10-year-old boy legs were kept and asked them to pick the one they wanted. They told me that a 10 year old boy leg would not work for them. I stated that was true because it cannot be a one-size-fits all with something so unique and custom to the human body. I went on to explain that is what our complex wheelchairs are to us – custom prosthetics that fit our unique body needs and we need it to be pulled away from a one-size-fits-all umbrella.
For the appeal to protect urological supplies from being included in the competitive bidding process, I would briefly describe that just as my unique chair replaces my legs, my individual catheter needs replace my bladder. I then told them about a catheter that costs $1.75 each and if you pee 4-5 times a day that equals $5,000 a year. I asked if that is what they pay to pee each year? Of course, they are shocked and agreed that is not right.
In the past, I have used their house, their shoes, their cars….anything I can think of that they would be greatly diminished if they lost it as my examples that they can feel right then in the moment. I could say, “imagine if you were paralyzed…” but the truth is, they cannot imagine that. There is no way they will make that connection in their mind unless they have experienced it. So, I have to take something that they do currently feel and understand and take that from them. Now they feel it.
I would talk about the budget and I knew that it came to the bottom dollar, but when your budget decisions cause people to suffer, than are you really working for the people?
Word pictures and thinking of examples to help them feel our fears and frustrations is extremely helpful in getting them to receive our message.
- Speak something!!
Any advocacy, at any level, is better than none! We are selfish to say nothing. We owe it to one another, and for those who are not able to speak, to advocate. There is ALWAYS something to be done. You can start small, you can start with a friend, you can start with an organization like United Spinal, or you can go solo and pick one issue at a time. But, start somewhere!
I hope this all makes advocacy seem a little less scary and that you will see that advocacy will open doors of opportunity for you, bring changes that will help many others, and helps with healing as it brings value to the path we have been given to travel.
Go get ‘em!
*Please share your advocacy thoughts and ideas in the comments!