Would you like to make the world a better place for people with disabilities? One way to do that is to get to know your local, state and federal representatives. We are fortunate to live in a democratic society and should never take that for granted. It’s easier to complain about what is wrong in the world rather than becoming part of the solution. Unlike other countries, Americans have the right to free speech and the right to vote. A short time ago it was completely acceptable that both public and private buildings were not accessible. Voting locations and voting machines have not always been accessible, which has historically made it difficult for people with disabilities to participate in our democracy. These days with improvements in technology, it is easier than ever to vote and contact legislators about issues that are important to the disabled community. Travel can be difficult for people with disabilities, but that is not always necessary to be a great advocate. Making sure that our representatives hear our voices is important. There are many things you can do to improve the lives of people with disabilities through advocacy.

My background is in social work, so my career has always involved advocacy. I worked most of my career in hospitals and I advocated for my patients to have more physical therapy and to get a custom wheelchair to improve their independence. Fighting for other people is fun! When I started to work for Numotion I realized all of the cuts in reimbursement that were happening to custom wheelchair frames and accessories. Advocating to protect complex rehabilitation technology (CRT), caused me to get more involved with the United Spinal Association, National Coalition for Assistive & Rehab Technology (NCART), and the National Registry of Rehabilitation (NRRTS). These organizations have taught me a lot about legislation impacting wheelchair users and how to be a better advocate. One of my favorite things that these organizations do is organize days on Capitol Hill. These hill visits are organized events where advocates visit with representatives and senators from their respective states. This a great way to network and learn from other veteran advocates. It’s amazing to me how one person alone can be powerless, but banded together with others we can improve the lives of people with disabilities.

Finding Your Legislators

The first step is to find the people that were elected to represent you. Technology makes it easier than ever to find legislators that represent your district. In a matter of minutes, you can find all of your state and local representatives on USA.GOV just by entering your zip code. This website will give you the contact information for all of you legislators so you can start making positive change for the disability community. Once you have identified all of the people who can help you make a change, it's time to get to know all of them. Creating good relationships with your representatives and their staffers is the best way to make an impactful policy change. 

Good Preparation

The more knowledge you have about your topic the better off you will be. Before you go to meet with your legislators you need to know everything about the issues you are going to speak to them about. When you are very informed about a topic, you become an asset to your legislators. Make sure you have spoken to many people who have the same concerns that you have. There are usually organizations that have lots of experts on your particular disability. United Spinal Association, ALSA, MS Society, NCART, NRRTS, Reeves Foundation, are Spina Bifida Association are just a few national nonprofit organizations that help people with disabilities. Depending on your specific disability you should contact the related organization and find out about current pending legislation. Get involved with groups that already have well-defined issues. There is always power in numbers and being a part of a group can be impactful. 

Communication

The key to advocacy is creating relationships with lawmakers. The best way to create a relationship is regular, informative, respectful communication. The types of communication can be in person, phone calls, emails, and social media. An in-person meeting is always my first choice. When you are sitting face to face with another person and they can see your passion for your particular issues it's very helpful. The fact that you took the time and effort to go to their office also shows your dedication to your issue and the community you are advocating for. Always make good eye contact and display confidence. Assertive communication is important, but never be loud or aggressive. Respectful, clear and concise communication is best. Make sure you are always welcome for another visit.

Using personal stories are the best way to drive your message home. The policy is important, but what people remember is your story and how their support can improve your life. Reading from a piece of paper is never very emotional. When you tie an emotional story to a subject it creates something memorable and people are more likely to be persuaded in your direction. Telling your story humanizes an issue and makes your testimony powerful. Staffers have back to back meetings all day, every day and you want your meeting to stand out.
Using social media is also an effective communication tool for advocacy. Social media is a good way to share your message and enlist the help of others. When you are friends with people in the disability community you can get them to help with pressing issues. You can build a network of supporters with Facebook, Instagram, Twitter or LinkedIn. You can keep your message interesting by using pictures, blog, and video which engages your fellow advocates. Social media is particularly helpful in building community among people with disabilities who might otherwise be isolated and unaware of important issues. Click here to read an article about social media and advocacy from the Global Journal of Community Psychology Practice.

Staying Organized

Successful advocates are not only informed, but they are also organized. You should keep a record of all emails and phone communications between you and your representatives. Keeping everything in one notebook or one folder on your computer is very helpful. Taking notes about conversations and keeping email correspondence will help you to track your progress on issues. I like to keep articles and statistics related to the topics I am advocating for neatly organized as well. Being able to refer to data you have collected on a subject can be helpful when advocating. For example, when I am advocating to get Medicare to cover standing and seat elevation technology, I use the scientific studies about the health and functional benefit and provide that information to lawmakers. It is helpful to have that information readily available and ready to attach to my correspondence.

Follow up is Key to Success

Advocacy is about building relationships and that takes time. One visit to your law maker's office will not do the trick. You must go to the representative's offices, call and send emails thanking them for their time and repeating your request. If you have visited a law maker’s office, the next week follow up with an email thanking them for their time. If they have promised to do some research on your issue, ask about what they have discovered. Record their response if it's a phone call and ask when you can touch base with them again. Representatives need to know that you will be around for many years to come until positive action is taken. Advocacy takes enormous amounts of patience and persistence. If you are successful in getting important legislation passed then make sure you send a thank you in writing and share on social media what they have done to help the disabled community.  In general, our lawmakers work hard to help their constituents and hear a lot about what is wrong. It is very rewarding for them to hear from people when they are happy too. Thanking your legislative champions goes a long way with building a good relationship.  

Conclusion

Advocacy can be a rewarding journey. We are all the beneficiaries of advocates from past generations. It feels good to be a part of a cause that you know will benefit people who due to their disability or social situation can't advocate for themselves. Creating a relationship with your state and federal representatives is the key to making improvements in government policy. All of your efforts will not be successful, but you can never give up. I have always felt like being a part of a cause you believe in is rewarding. I have made many friends through the years through advocacy organizations. I encourage you to find an issue that sparks your passion and get involved. Your voice counts in America, so get out there and make the world a better place!
 
Karen Roy, Numotion Brand Ambassador

Author

Karen Roy, Numotion Brand Ambassador

Karen Roy is a Licensed Clinical Social Worker with 20 years of experience. Most of that time was spent as a Case Manager for an in-patient rehabilitation hospital. She was the victim of an armed robbery in 1987 and has been a wheelchair user for the last 31 years. She had 3 kids after her injury. Caroline, Austin and Joseph are all in currently attending college. As Ms. Wheelchair America 2019 Karen’s platform was “Stand for Life”. Her platform is about the use of standing technology and other devices that improve the health and well-being of people with disabilities.