Why Family Can be the Most Challenging Advocacy Conversations

Over the last month, I’ve delivered a number of workshops on How to Share Your Story and Advocate for Change. In discussions with participants about advocacy challenges a common theme has emerged – conversations with family members.

 While you’d hope that family members would be non-judgemental and supportive of individuals with disabilities, sadly this isn’t always the case. They can be the harshest critics.

 Why? There are way too many reasons to unpack in one article, or even a year of counselling. But here are some tips to help you have tough conversations and advocate for your needs with family members.  

1. Get clear on your diagnosis

It’s amazing how many assumptions people make about a diagnosis without really taking the time to understand how it presents in an individual. This is why we get the unhelpful comments like my friend’s son cured his autism by eating a vegan diet, stop complaining and take an Advil for your migraine, ADHD is just a trendy diagnosis, back in my day we never had X, Y or Z.  

I’m sure you can add to this list of unhelpful and unhealthy comments.

I realize it can be exhausting telling your story and having to educate people on your diagnosis. I’ve been there!

When my son was young, he had a life-threatening egg allergy. Despite being aware of this, a family member answered the door drinking a glass of egg nog and eating an egg salad sandwich when I dropped him off to be babysat. We immediately turned around and left with my relative screaming – what’s the big deal? I’ll just wash my hands.

No appointment was worth my son’s life. So, I cancelled my meeting, took him home and never asked that family member to babysit again.

This was an important lesson for me. Even though I’d spoken about my child’s allergy many times, I’d never clearly explained what could happen with an egg exposure. I’d assumed the family member would’ve understood what life-threatening meant, or done some research of their own, but my assumptions were unfounded.

I learned that only I can truly explain my child’s diagnoses. Now I start by given a brief overview of the diagnoses (multiple in my child’s case) then explain what that looks like for my son. After all, each person presents differently and this can change over time.

2. Plan your conversations

My next advice is to never wing these conversations as they’re likely loaded with emotions. And trying to advocate in a moment of stress rarely ends well.

In the egg example, I simply left. I was too upset and frustrated to get my points across. Instead, I gave it a week, allowing time for emotions to cool on both sides.

I then took time to think about how I could explain the egg allergy in a way that would resonate with my family member. Thankfully, they had a friend whose grandchild has a peanut allergy. I talk about how a very tiny amount of egg can cause my child to break out in hives – pulling out a grain of rice to illustrate.

I then made it about them – how I know it would be traumatic if they had to call 911 when my son was visiting. This is why we have an egg free house – to eliminate any risk of exposure. While I don’t expect my family to go egg free, it’s important no one eats egg products while my son is in the home.

When we’re able to plan our conversations ahead of time and talk with family members when we’re not stressed or emotional, our chances are of having a true conversation increase.

It’s also okay to state the elephant in the room. Some examples include:

• I know you likely think I was overreacting but a tiny piece of egg, smaller than a grain of rice, can cause an anaphylactic reaction.

• Most people think a migraine is just a headache. While head pain is sometimes a symptom, it can also result in vision loss, disorientation, severe light sensitivity and a variety of other symptoms. This is because it’s a neurological condition.

• ADHD is not a fad diagnosis. People have always had ADHD, they just didn’t get diagnosed. In fact, 1 in 9 kids in the US have been diagnosed with ADHD. As we learn more about this neurological condition, we’re better able to diagnose, and ultimately help kids.  

3. Establish clear boundaries

There can be times that when, despite your best efforts, family members just aren’t supportive. This is why it’s so important you establish clear boundaries.

I have an autistic child who has anxiety. When it comes to family get togethers (which are thankfully rare as I live on the other side of the country), I set boundaries in advance. I’m clear on how my child’s anxiety is triggered and what needs to be done to keep him safe.

This includes limiting the number of people at the gathering (smaller is better), keeping noise at a minimum (watch tv in the basement vs in the common room) and honouring his need for space.

I also talk about not making assumptions about his behaviour. If my son walks away to go on his iPad it means he needs a break. Comments about how kids spend too much time on technology are not helpful, and cause more stress. Respect his need to be alone and he will return when he’s ready.

4. Remind people of your boundaries

Once you’ve established boundaries (ideally before the family get together) you’ll need to remind people. While yes these are important to you, they’re likely not top of mind for your family.

Before the event (even a simple family dinner), have a phone call or send a reminder to your family of what is needed and why. Then at the event, if someone is approaching the boundary, let them know. Don’t wait until they trample all over the boundary to say anything.

And if this doesn’t work, feel free to leave. I’ve left many family events, or taken a pass on attending, when I didn’t feel my child’s needs were being respected.

This isn’t about me being a helicopter parent or you being a high maintenance person. Rather, it’s about honouring the needs of people with disabilities when it comes to family interactions – small or large.

If none of this works, you may need to re-evaluate what relationships build you up and what ones you need to let go of as they break you down.

Hopefully you feel better prepared for advocating for your needs with family members. Remember, you teach people how to treat you. If you don’t like how you’re being treated, look at what actions you need to take to educate people on your diagnosis, set boundaries or simply end the relationship. At the end of the day, your mental and physical wellbeing is your priority.