Meet Eleanor Bailey

AppleMark

Eleanor and friends

“It’s part of human nature to have a disability.  We’re just like other people that don’t have disabilities—we’re just people, and we’re people who are part of the community,” says Eleanor Bailey, a disability rights advocate and customer at Independence Northwest Brokerage.  Eleanor is passionate about improving the lives of individuals with disabilities through advocacy and her history of involvement in disability rights issues extends back to her childhood.  “I just love doing it!  A lot of people love to hear what I have to say,” she explains.  “I’ve been to Sacramento, and I made a big presentation about my years of school and how I was fully educated and how I was never in a separate classroom.  I talk about that and a lot of other things that people really need to hear.”

Eleanor uses brokerage services several times per week, primarily for support accessing community activities and resources.  It is important to her that individuals with disabilities remain present, visible members of the community. When asked about her experiences at Independence Northwest, Eleanor said, “I think they do a great job serving people with disabilities and with services.”  She stated that she has an excellent relationship with her current Personal Agent, Jenny Child, who “is awesome.  She understands a lot of things, how the system works and everything.”

With brokerage supports, Eleanor founded a group called “Accessible Cooking” that she runs with the assistance of an independent provider with whom she contracts via Independence Northwest.  The group is a unique opportunity for Portland-area adults with intellectual disabilities to meet and work on cooking skills, and takes place one Thursday each month at a local community center.  “We make a lot of things that are healthy.  Like a week ago we made quiche and we’ve made smoothies… Some people with disabilities are afraid to use sharp knives or the stove, so we use easy things like the blender.”  Eleanor added, “We love to have new people come!”

Eleanor out in the community

Eleanor out in the community

In her seven years receiving brokerage supports, Eleanor has participated in a variety of programs and services, including site-based and community-based programs for adults with disabilities, independent providers, and agencies.  In sharing her perspective on these different service models, Eleanor said that group settings, while at times fun, often have complicated social dynamics that can be frustrating.  She said her current program addresses this through “a no gossip policy and they have a no drama policy.”  Working with independent providers has also had its challenges.  She said that her current independent provider “is reliable” but adds “that is the main struggle—it’s reliability.  I had other providers who are not reliable—they say they are going to do something, and they put it off.  It just shouldn’t work that way—I’m sorry!  My job is to interview providers…. But all in all I’ve had good ones so far—it’s just the reliability issue—they really need to boost the reliability issue.”

Social equity issues that Eleanor is currently involved with include physical accessibility of public spaces and employment opportunities for people with disabilities.  “Something the community needs to work on is curb cuts.  There aren’t a lot of curb cuts and that makes it very hard for someone who is in a wheelchair.  Yes, they need more curb cuts.”  And, referring to one employment program, “The problem is they only pay people with disabilities 50 cents per hour, and that’s not enough.  Being part of the community is having rights, and knowing where you want to work, and talking to people who don’t have disabilities.  People with disabilities should have the right to work anywhere they want.  I don’t believe in sheltered workshops, I find them a waste of time,” says Eleanor.

Eleanor is a self-advocate and speaker with Northwest Down Syndrome Association, where one of her roles is to meet with mothers of children with Down Syndrome.  “They are scared because they don’t know what school is going to look like… what education is going to look like for their kid.”  Many parents, Eleanor said, are told their kids have behavior issues, which maddens Eleanor, “because kids with and without disabilities need to work on their dynamics and social skills” and it is not a proper justification for segregated classrooms.

Eleanor and friends at the Portland waterfront

Eleanor and friends at the Portland waterfront

Having a regular job is not one of Eleanor’s current priorities.  “I’m not worried about working right now.  It’s mostly up to you if you want a job or don’t want a job.  I’m not working right now.  It depends on what YOU want!”  What is important to Eleanor is participating in the community, staying healthy, and continuing her advocacy work which she says is influenced by her dad, Michael Bailey, former president of the National Disability Rights Network, and author of “Special Education: A Parent’s Guide to a Child’s Success.”  Eleanor said, “I’ve been around Michael, who is my father, around him a lot.  I like what he does.  We have the same characteristics about things.”

%d bloggers like this: