The Reluctant Advocate

I never asked to be an advocate. Then my youngest son was born with a disability. I became involuntarily immersed in the world of mama bears. Advocate is a thankless unpaid job that I never signed up for.  

If you are a caregiver or a patient, you get told constantly that you must advocate. I've had social workers, physicians, nurses, teachers and even other moms tell me that it is my job to speak up. This is my story about how it feels to be a caregiver who is also an advocate.

Here is the reality of being the mom of a disabled child: You have to advocate to get essential medical care. You have to advocate for your child to have an education. You have to advocate for basic human rights. You have to advocate for your child to be shown respect and dignity. You have to advocate for your child to access services. You have to advocate for funding. 

My son is an adult now, and the advocating never ends, whether I want to be an advocate or not. I was given no choice. This is not my son’s fault. It is the fault of inequitable systems and society, and the human beings that make up those systems and society.

I’m interested in how it feels to have to advocate. This is a topic that’s rarely addressed.

Advocating often starts with a personal struggle, which can look like speaking up in a clinic room or at a school meeting.  For some people, advocacy can evolve into rabble-rousing for broader system change.

The catch 22 is this: Institutions like governments, hospitals or schools will never change on their own. They only change because they are forced to change. Enter the advocates, the ones who force the change. 

Ironically, the advocates are those people who also carry the heaviest loads in life – they are sick, or caring for someone, they are struggling financially because they’ve had to leave their jobs, they are exhausted but they must keep going.

I was raised to be a “good girl” – well-behaved, pleasant, to stop feeling sorry for myself, to never be angry, to not rock the boat, to shut up and sit down. 

Advocacy demands the opposite qualities. It requires an anti-establishment punk rock mentality, where outrage fuels a call for justice in systems that are built to marginalize human beings.

This is all gross if you are someone like me, a reluctant advocate who is deeply uncomfortable with not being liked. I don’t want a thick skin, as I learned to appreciate the qualities that go along with my thin skin, but I won’t lie to you and confess that advocacy is really really hard for me.

Don’t like conflict? Too bad for you. Speaking up means going against the status quo – against authority figures and policies. I often push for change that is contrary and people who benefit from being part of the establishment don’t like that. It makes them defensive, or worse, dismissive. I often feel as if I’m shouting into the wind.

But conflict has been part of my entire advocacy career, no matter how deeply uncomfortable I am with it. I’ve never grown to like conflict, but I do accept it that conflict is part of my world.

Here are ten lessons that I’ve learned to deal with the inevitable advocacy:

1.    Armour up – this looks different for everybody. For me, it can be as simple as getting a take-away coffee and going for a walk before and after a meeting or phone call. Sometimes it means bringing my husband along or sending him if it is too much for me. 

2.    Recognize all emotions are okay – it is natural to feel angry or fearful or sad about the injustices of the world. This proves that you are human.

3.    Find peer support – peer support simply means being connected to other people who have similar lived experience. Folks where you don’t have to explain yourself.  Build that community. Go for regular coffees. Text each other. Care for each other.

4.    Identify your allies – find your allies who work within the system and ask them to do what they can do to advance your good cause. We spend a lot of energy on the people who don’t get us…it is a better use of our time to focus on those who do.

5.    Celebrate all wins – no matter how small, pause to celebrate the wins.

6.    Keep your humour – many system policies are ridiculous. Why do I have to prove over and over again that my disabled son is disabled? His Down syndrome has not gone away. Why do I have to validate every month on a government form that there’s no warrant out for his arrest?  Find someone you can laugh at the absurdity of the system.

7.    Find the joy – the joy is you. The joy is your loved one.  Don’t forget your collective awesome.

8.    Take a rest – rest seems impossible with all the deepening injustices in the world, but rest is essential so you can keep going. Pace yourself.

9.    Pass the baton – people ahead of us have paved the way for us, and we pave the way for people behind us with our advocacy work. It is important to know when to pass the baton to the younger generations.

10. Recognize realities about change – zooming back to look at the big picture – when we advocate for our loved one, this is a dent in the universe of change. Improvement is a generational movement, with a million different actions by advocates adding up to a swell of change. As I’ve seen in health care since 2020, change can also be negative and systems can also regress. Change is not always for the better. This is particularly disheartening. Pause to take in this reality and soldier on.

Keep the big picture in mind. Plant seeds. Find the joy and humour. Take a rest and pass the baton. You might not see change in your lifetime, but your efforts, which might feel invisible, really do matter.

Never ever let the system hijack your value and worth. I promise you that you and your loved ones matter. Xo.