My mother was my role model. Often times this is the case for daughters. But especially for me. I tagged along everywhere with my mom. I was the last one home and my mother finally had some time to get out of the house (after raising 10 kids) and she bundled me up and I went along with her. I remember going to the Board of Education. City Hall. Harrisburg. Washington DC. Picketing. Marching. Meeting. My first school room was a pilot school room started by my mother. A trip to the grocery store also included a trip to other mothers’ houses — where my mother brought them groceries. A walk to the corner was taking the policeman a cup of coffee. My mother was civic minded. Involved. And a visionary leader. When it came to her passion — equal rights — she was unequaled in her foresight, ability to engage and encourage. She was understanding and hope. In short, she was an astonishing woman. I aspire to be a fraction of what she was. I have a long way to go.
When it comes to my brother David, my mother was my role model. To be good in my job as his advocate, I tried to do what I thought she would do. What she would have wanted. And this has taken me very far.
But in reframing how I see and treat my brother and subsequently reframing how others see and treat him, my current role models are self advocates I have met.
Let me give an example. My brother David requires foods that have been very finely chopped. When we go out (conventions, other people’s houses, meetings, restaurants) they do not typically have finely chopped food. Or soft moist food. His food comes. (Sometimes i ask the kitchen to chop it but then it comes back not chopped enough anyway) So, the food comes, I lean over and chop it up. I taste it to see if it’s too hot. I take food from my plate and give it to him. I never thought anything of this. Sharing food, plates. That’s what we do in our family. (I remind you, we had 10 kids and a lot happened over food!) Anyway, my friend was sitting with us at one event. She happens to have Cerebral Palsy (as does my brother). She said, hey Kate, you want to chop up my food next? You want to taste it? And I looked at her and she was totally jerking my chain. I had to step back and look at myself and say, hey what am I doing? Would I do this to her? If she wanted me to cut up her chicken, I would but I wouldn’t do it like I was feeding a baby. And that’s what I was doing with David. I acknowledge it takes a while to break a habit you’ve had for 40 years. But it was a self advocate who helped me take a step back and look at myself and start the process.
Self advocates are teaching me the presumption of communications. That everyone “talks” and we have to learn how to listen better. That its okay to ask a person how best to communicate with them. Self advocates are helping me be more patient which is hard to do in a world of 30 second sound bytes. Self advocates remind me daily to be inclusive — meaning to actively engage everyone in the conversation and not just allow them a seat at the table. Another friend stops me from saying “hon” and consistently reminds me “I have a name, use it.” and I noticed that sometimes staff around my brother don’t use his name like he is an interchangeable object du jour and I so get it! And in a new field where everyone seems to hug, its my friend James (he has said i can use his name) who reminded me just yesterday that many individuals with developmental disabilities have been victims of sexual abuse and we need to think twice about all this hugging. In fact, it was James and his reminder that pushed me to write this blog! (Thanks James)
Now I want to confess that all the things I’ve been learning require a change in my behaviors. And that takes time. But, I’m working on it. I’m working on it. So, my friends, keep telling me, keep sharing, keep showing. I’ll get there.
Parents have done a great job making room for their children. But it’s their children who are showing me that they are not children for life. Self advocates, thank you.
To know a man, walk a mile in his shoes? We cannot truly walk in the shoes of self advocates. We cannot. But we can sit next to them as they recount their story. Listen and watch and learn. And allow their experience to change our path. A journey starts with one step and I am on the road!
It’s called a movement when it’s moving 🙂 Here we go!
Yours in Community,
Thanks for this post, Kate. It’s true that we family members have a lot to learn from self-advocates. My brother just turned 40 years old, and went on a trip with our parents to celebrate. He called me when he got back, and when I asked how it went, he said “mostly okay, but I didn’t sleep much because there was too much snoring in the room.”
I was surprised to learn that at the ripe old age of 40, our parents were still making him sleep in the same hotel room as them. Again, I suppose this is an old habit since childhood vacations.
I was then embarrassed to remember that last time I organized a “sibling sleepover” with my brother, my husband and I also hesitated to get him his own room, and ended up booking a room with two double beds. Our reasoning was that it would be more convenient for him to be near us in case he needed any help at night, and I guess we were trying to save some money as well. But that’s not how one treats a friend who is 40 years old! After all, he has been sleeping alone in his own room successfully for the past thirty years. We will make sure to book a separate room for him next time.
Thanks so much for relating and sharing. Yeah, right? What we do as children sometimes just continues on! In case my other brothers and sisters might see this… I want to say I’m not prepared to take a look at all my sibling relationships for stupid behaviors! I want to remain in ignorance! Thanks again, Kate
Dear Ms Kate In 1983 December 6th. I thought my mom be with me forever. During this time I was only 17 years old. I did not know what type of path going have in my life. Often times how get those right words when share my thoughts and ideals. This was my real mom birthday she would be 70 years old. I wish so many mothers could meet her. My mom did not have tools to be advocate for as young kid too high school. Those words you share mean so much too me. Good luck in your new job. If you need advice I would be happy share my thoughts too you. Sincerely James R Meadours
James. I’ve learned so much from you. Thank you. Your emails always make me stop and think. And, for anyone reading this I want to say that you are a terrific speaker. Thank you James! Kate
I going be in Wasington DC in September for key meeting. I hope see each other. Never give up speak you for myself and others do not have voice from themselfs. Your friend always James R Meadours