People often ask me how to become an advocate – how can they do more?
Being an advocate is such a dynamic existence. You have the opportunity to shape lives as your own experience evolves. You’re constantly sharing what you’re learning so you can help others. It’s tiring, but the rewards are more than worth the work.
Here’s the thing – if you have a disability, you’re automatically an advocate. If you are the parent of a child with a disability, you become an advocate by default. That’s because everything you’re doing for yourself or your child impacts others.
Think about it: visits to the doctor, working with an IEP team, how you answer questions about disability; all of these things influence how others perceive individuals with disabilities and their family members. Our words and actions are shaping how the rest of the world views the disability community as a whole. That’s important for us to keep in mind in our every day interactions.
Often there comes a time when we want to do more. When we want to give back. When we want to help others in a more direct way. Often we don’t know where to start. It’s overwhelming. But it’s far easier than you think.
TAKE CARE OF YOU FIRST
Caring for yourself or your child is akin to triage. You need to make sure your needs are taken care of before you can help others. This is most prominent when you first receive the diagnosis and line up the care and resources you and your family need.
But it’s also important to put yourself and your family first as the years go on. Your health and emotional well-being should always trump your commitments. When your own issues feel overwhelming, step away from everything that isn’t a necessity. Whether it be missing meetings or volunteering less – it’s OK to take a break. You can always come back.
You don’t have to start off marching on Capitol Hill. Ease into it. Join a Facebook group that focuses on inclusion. Read up on issues. Figure out what you’re passionate about and understand that issue inside and out.
Advocacy groups provide easy ways to make a difference without even leaving your home. The Arc is a national organization with state and local chapters. It promotes and protects the rights of people with intellectual and developmental disabilities. Sign up to receive the group’s email alerts and it will send you templates that you can send to your state legislators to inform them about issues affecting the disability community.
Other advocacy and support groups offer similar opportunities. Autism, Down syndrome, and Cerebral palsy support groups are plentiful. Find one in your area. If you have a lesser-known condition you can often find help online with people facing similar issues. And of course, the Center for Family Involvement and its Family to Family Network offer not just support, but ways you can give back.
Sharing your frustrations online is a great place to start. But often you’re just preaching to the choir. If you’re looking for maximum impact, look locally. If you have an issue with your school and you can’t get through to the IEP team or the principal, speak at a school board meeting. Trouble getting what you need to live independently? Attend a Community Services Board meeting and explain your circumstances during the public comment section. Your county or city’s CSB handles services for those dealing with mental health, intellectual disability, and substance abuse. If your CSB can’t help you, they can usually direct you to someone who can. City Council meetings are another great place to be heard. Don’t be afraid to speak up. These people are public servants – they are here for YOU!
GET INVOLVED LOCALLY
When you are ready to actively participate, you’ll find opportunities abound. Community Services Boards need members who understand why their programs are so important. Special Education Advisory Committees (SEAC) advise school boards on special education policies. They need members who understand the needs of a wide range of students in their schools. School PTA’s can use parents who understand the dynamics of the needs of all students. Local advocacy groups almost always need volunteers. Many of them offer training as well. Center for Family Involvement’s Family to Family Network trains individuals and family members affected by disability so they can support others in the Virginia.
Many states, including Virginia, have a program called Partners in Policy Making. This is a 9-month long training program that gives background on the disability rights movement and where we are today. Topics include public speaking, waivers, person-first language, self-determination, and more. Speakers from around the country give presentations each month and answer questions. It’s an intense program but it’s certainly worth your time if you want to do more but need guidance.
If a year long commitment isn’t what you’re looking for, look for training seminars and conferences. Webinars are a great way to learn more too. Get on those advocacy groups facebook pages and newsletter mailings and you’ll know what’s being offered.
GO WITH A GROUP
Many advocacy organizations host events where they visit legislators as a group. These functions are a great way to see how it’s done. You can speak as much or as little as you want. The Arc of Virginia and its local chapters often helps advocates get to Richmond for the General Assembly each year. You have an opportunity to meet with lawmakers and share with them how their policy decisions impact your life and the life of others in similar situations. The National Down Syndrome Society hosts its Buddy Walk on Washington annually. The event isn’t really a walk. NDSS offers a full day of training on issues it deems important to its members. The next day participants from around the country head to Capitol Hill to meet with their legislators and discuss those issues. Opportunities like these area a great way to learn how to work with our state and national leaders right along side seasoned advocates who have done it many times.
If there is something your passionate about and you decide you want to take it on, you must get organized. First, find out if someone has already gotten the ball rolling on it or a similar issue. There is power in numbers. Bigger advocacy organizations might have an issue on their radar but need more time to hammer out details and policy.
Reach out to everyone you know who might be up on the issue. Talk to other advocates about how the got started on facilitating change. Social media is a great tool to get more people on board. Once you get the ball rolling, you will know what to do. And as you gain momentum, some of those bigger groups might want to join in.
BEWARE OF BURNOUT
Advocacy is often grueling and thankless. You could be working on the same issue for years with little progress. You will have to compromise. It will feel like a losing battle. With that, remember to celebrate the smallest victories. Cherish the friendships you make along the way. Embrace the mindsets you are changing. Remember everyone your helping. Remember that passion you had when you first started. Remember how far we’ve come even though we have a long way to go.