7 minute read

by, Renee Wood

In the developmental disabilities (DD) world we speak of advocacy as if it’s an everyday event. This goes for families, as well as people living with DD – and for us – it has to be. However, in the everyday American life of non-disabled people, advocacy is only utilized in events that occasionally surface, or they are systemically unfair. Yes, many minority groups face systemic unfairness, but not usually within the four walls of their own home. That’s not exactly true for most people with DD. Every day is some kind of a challenge when you need assistance in your own home, so we have to practice advocacy skills every day of our life – that is exhausting!

So what does advocacy look like when it’s not a rally, lawsuit, or policy fight — but just a sunny Friday morning at the kitchen table in the home of someone with DD who needs paid assistance? I’ll tell you in one sentence what it does not look like, “It’s not what the average American goes through just to get a piece of toast with jelly on it”! Does this mean all workers are the same? No, definitely not! And through the years I’ve had some very good workers who listened to me and respected my wants and wishes. They made life ordinary and that’s all I want. But I’d be lying if I didn’t say, there aren’t enough workers who honestly understand their position in your home, which forces you to advocate, if not on a daily basis, at least on a weekly basis, just for your wants to be respected.

It’s important to clarify the difference between event-based advocacy, and the unseen, but necessary everyday advocacy that we, as people with DD, are forced to exercise  – just to get a piece of toast with strawberry jelly. Event-based advocacy is usually a bunch of people voicing their right to have businesses accessible so they can utilize them, affordable/accessible housing and transportation options, etc. – so they can live in the community. It’s collective – promotes strength in numbers. You know you’re not alone, you’re not being unreasonable because other people there are saying the same thing you are.

When you’re alone asking for a piece of toast and jelly that you are unable to make yourself, it’s disempowering to be constantly met with a challenge over a simple request. Your worker might say, “That’s not very much. Would you like something else”? If left at that it would be reasonable. But when you reply, “No thank you. That’s all I really want right now”. And they continue to challenge you, saying you can’t just have a piece of toast. “I’m making you some eggs”. You continue your diplomacy trying to nicely say this is all you really want right now. After that, if they continue, it becomes a battle of wills – and now you don’t even want the piece of toast with jelly that you were looking forward to. If they bring you the eggs and toast, maybe without jelly, what are your choices? Just not eat it? Ask for jelly? Or throw it on the floor – hoping maybe next time they will listen to you? But you know throwing it on the floor, will make you look unreasonable, and you will get in more trouble from the powers that be, than the non-disabled person taking care of you. From the non-disabled perspective, it appears that the person with a disability is being disrespectful because after all, the worker was just trying to be helpful. It’s a whole idea that these workers are “saints” for doing this kind of work and you’re just ungrateful. It reinforces that their status is above ours.

This type of advocacy is a matter of “survival of sanity”. You’re alone – no one’s there to witness what is going on. Your credibility is already questionable just because you have a disability, so learning how to navigate situations like this becomes a way of life. Teaching direct care workers how to respect our autonomy, is just one aspect of this unseen (or quiet) advocacy that goes on in our homes everyday. It’s also navigating their schedules, dealing with the Medicaid waiver system and all its dos and don’ts, and that doesn’t even include the billing nightmares that have to be corrected so workers can be paid. On top of that you have to advocate for the dignity in personal care routines, such as one cannot just gloss over my private parts, but actually have to wash them – whether they are comfortable with it or not. Try to navigate that sensitive issue.

This is not just coping in everyday family life with those who love you. This is high level executive functioning skills that occurs in our every day life 24/7. If we do this totally independently, we do not get credit for these executive functioning skills. However, if someone is paid to do it for us because we are unable to, or just don’t want the bother – these workers get paid for doing it on our behalf – and it counts as executive functioning on resumes. However, those of us with DD, who actually manage these things on our own, are labeled as “outliers” – again put in our place and not given credit – where non-disabled workers would be.

Many people with DD will never go in front of a legislator, hold a sign out on the sidewalk advocating for housing, or sign a petition. But they will have to advocate every day in their homes, to go to bed when they want, work where they want, and even having a simple piece of toast with strawberry jelly on it, without having to defend why they want, what they want. When I am invited to speak about advocacy, this quiet everyday advocacy is the type of advocacy I really want to talk about. This type of advocacy will make or break their life.

If you don’t think this is hard work to manage a household with all these workers elegantly and with grace – then you have no idea what it’s like to live with a developmental disability and have workers coming in your home every day. Especially, when many of these workers (because of the society we live in) truly believe they are superior to us. Would they openly admit that? Of course not – but if you watch and listen, it’s just as plain as the nose on your face. To navigate this takes strategic thinking, the ability to get along with people when you’re the boss, but they think they know what’s best. Also the ability to let someone go, when it’s obvious, that everything you’ve done to try to get through to them, just isn’t going to work because they just can’t “get it”.

I challenge any non-disabled person to put themselves in a position where, in your own home, hiring people who truly believe that they are superior to you – trying to get them to respectfully listen to what you want and not challenge you every step of the way. If you don’t think that’s exhausting, try it. That’s what Saints are made of and most of us are not saints, but we do pretty damn good and deserve credit for things non disabled people have no idea what we go through on a day to day basis. That’s not wanting pity – that’s asking that our executive and strategic skills are recognized as valuable work experience, even if they are unpaid.

Advocacy isn’t always loud. Sometimes it’s quiet, persistent, and deeply personal. It happens in kitchens, bathrooms, and bedrooms — in moments that most people never see. And yet, it requires the same strategic thinking, emotional intelligence, and leadership that systems claim to value. It’s time we recognize this invisible labor not as coping, but as contribution. Because for many of us, advocacy isn’t an event – it’s a way of life.