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!
One thought on “Advocacy Made Simple”
I can relate to this article. I was 40 when I stroked on a operating table. When I started going back to school night, (to a school I attended) in a wheelchair though you see it much different. The next day I called the superintendent to speak to him regarding the lack of ADA requirements around our school, his secretary told me to call building & grounds. I did, after I wrote a lengthy letter to the Department of Education & the DOJ.
I also started going back to my local town & county board meetings, where yet again, no handicap accommodations. I at first I let it go, but then when every time I needed to use the restroom I needed my friends help. That was the last straw! I contacted the Town Supervisor, explained to him what was missing in town hall, and asked him to please look into it. I also know the supervisor personally for a long time. Later, that same night I was told by the building inspector (someone I graduated with) that the building was grandfathered in and they didn’t need to bring the building up to code!
So again I went home and wrote my letters to the DOJ explaining that not only was the building not up to code but it was also a polling place so it was also a federal problem now because any elderly or disabled person that comes in that may need any time of reasonable accommodations that hasn’t been made to this building now has left the Town of Carmel open to a huge law suit. All I wanted was the ability to go to my mtgs in peace like all the other citizens.
So with both of these the Mahopac Central School District had to fix all there schools elementary school doors were switched out with ultra light bathroom doors, old saddles taken out, Some schools had to adjust there elevators. The HS policy was to still have an administrator hold a key to the elevator, when someone needed to use it, they had to be found to come use the key let you in bring the elevator to the floor you wanted let you out & you had to find them again the next time to use it again. That was the same elevator from when I was in school it was in the size of a closet door. Now it’s a bigger elevator, there is no key needed, the person inside has control to go up down, the other elevators & at the other schools have implemented the same policy which I am very proud of.
The Town of Carmel also finally had to implement the new changes, handicap door opening, signage, elevator the bathroom was kinda done on the cheap but I feel like I got my point across. When anyone comes to that building if for a meeting, to pay a bill or to even vote everyone should be able to enter by themselves with no problem, go to the restroom w no problem, it’s just common courtesy.
I look around a town I grew up in with totally new eyes. I haven’t asked for anything monetarily when I got stuck in the school elevator. I just wanted to make sure that would never happen to a child. I felt it’s hard enough on children being different, they shouldn’t have to wait for administrators to go from floor to floor (then I read the laws & found out they don’t have to!!) After I was armed w the law I was very happy, I knew what I wanted. I wanted my school district to be brought into the this century. On the form I had to fill out it asked me what I expected or what outcome I wanted and I remember writing something like I just want any to have the easiest time as possible.
Fighting for those things gave me a purpose. I would like to get involved more but there isn’t anything around me from what I can see when I go online.