An assistant to the secretary of the Illinois Department of Human Services, Audrey McCrimon has a variety of responsibilities that make her an advocate for persons with disabilities. She calls herself an "advocrat."
McCrimon was the co-recipient of the Motorola Excellence in Public Service Award in 2000. The award is co-sponsored by the North Business and Industrial Council and Illinois Issues.
She was interviewed by the magazine's publisher, Ed Wojcicki, who chairs the selection committee. This is an edited version of that conversation.
Q. I know you're an advocate for people with disabilities.
Considering I am one, yes. It's a self-serving interest.
Q. Why is it so important for you?
Though we've had medical advances that have removed certain disabling conditions from society - we've minimized the effects of polio, for example - the idea that you should do something other than go home and sit in the dark did not advance. We either have a patronizing, custodial view of people with disabilities, or straight-out fear.
That's changing because there's been a fight to do things like include kids in regular school, so that if you're in contact with the person, you get more comfortable with them.
For me it's important because, growing up as a child with a disability, I never was identified by my family as a child with a disability, but I was by all the bureaucrats in education and the medical world.
Q. May I ask what your disability is?
As a baby, I contracted meningitis. It impacted vision and hearing. I have very little vision in my left eye. I have no hearing at all in my left ear, and I have a 30 to 40 percent hearing loss in my right ear.
That could have meant that my communication in terms of speech and reading could have been very much affected. But because of the support I got, primarily from my family and extended family, it never happened. I'm an avid reader. I am often in large group settings. I maneuver.
When you came into this room, I made it possible that you couldn't sit in certain places by putting certain things in the way so that you would be in a good position for me to hear you well.
Q. I didn't even notice.
Good. I've been doing it for quite awhile. I've developed the strategies that help me navigate through different settings in a way that allows me to function best. So my hearing loss and vision loss - my hearing loss is categorized as severe - haven't kept me from working, and working in some pretty responsible areas. And I'm not the only one like me.
Q. How do you advocate for people with disabilities in this state?
Number one, Illinois has a very active disability community.
Q. For example?
The [local] centers for independent living, the Statewide Independent Living Council, the Illinois chapters of the American Council of the Blind and the National Federation of the Blind and the Illinois Association of the Deaf. The groups go on and on.
You can't speak for people. You've got to speak to the folks to see what it is that they're looking to achieve.
Q. Let's consider a real story about this.
Our tollways have oases. You stop. You're on your way from wherever to wherever and you need to call home - this was before cell phones or the preponderance of cell phones. Illinois has a significant presence of people who are deaf or hard of hearing. It has some natural clustering points: Jacksonville, where the School for the Deaf is located, and Northern Illinois University, where there's a special post-secondary program to help deaf and hard-of-hearing individuals get college degrees or certificates. So there are some travel patterns that emerge. A group came to me and said, "Look, we're on the road and pull in the oasis and can't call anybody."
Q. Why can't they?
Coin-operated telephone. Where's the TTY? If it's a deaf person, what are you going to do with a regular phone? Pick it up. Nothing. We got together a group that included the Illinois [State] Toll [High]way Authority, the Department of Transportation, the deaf folks, staff from the department, and we sat down. We figured out a map. Then we went to a vendor that was debuting a coin-operated TTY. We got them to install them along all the tollway priority oasis sites that we identified. Illinois was the first state in the nation to install coin-operated TTYs. And we expanded that. Once we got them in the tollways, we got them in the airports. So that's one example.
Another would be the establishment of the centers for independent living in Illinois - working cooperatively with people with disabilities in a particular community who identify a need to have this peer referral training and advocacy center in their community, and then come to us to work through the budget and legislative process to get funding for it.
Q. Could you give another?
Curb cuts. A little gradation at the end of the corner. We have engaged people with mobility limitations, but also people who are blind or visually impaired to help us test the quality of them.
Q. When you say we, who is "we"? Your department, your agency?
Yes. Test the quality of them, identify problems, and even identify priority locations because of travel routes. You know and I know that if you're pulling a roll-along suitcase with that computer, or that travel bag, you will look for that curb cut just like the person in the wheelchair or on a walker.
As society ages, as baby boomers age, we're going to want to do a lot of the same stuff we do now, but we may not be able to do it as long or as well. But what adaptations are there that will allow us to continue to enjoy something that's really important to us? That's the same thing that people with disabilities want. So their interests dovetail.
The barriers that exist are surmountable in most ways because everybody has similar interests. We want the same things, basically. How we go about getting them is different.
Q. The state is facing real financial problems in meeting all the needs of various groups that advocate for people with disabilities. You probably know them all.
Q. Those groups are trying to make a point. They're saying that Illinois ranks 39th nationally in spending for community-based service. Do you have a reaction to that?
I don't know what the factors were that would place us 39th in spending on community-based service. However, my first reaction is that community-based services are a good deal for those folks who can live in the community wisely, safely, and have enough supports that relate to their individual needs.
There is no doubt about the fact that Illinois has led the nation on a number of issues relative to community service programs, like a community reintegration program, which means Joe Blow who went to an institutional setting at age 20 - we brought him out - [is] in an apartment with personal assistance, and maybe in the local community college taking classes leading to some goal he has.
I think the question might more be what's the expectation level. One of the things that happens when you know you've done something well, when people begin to believe in it, more people want it.
Q. Expectations increase, is what you're saying.
Expectations increase, which is a natural outflow of the advocacy leadership that has happened in Illinois.
Q. So that's not all bad, is it?
No, and I think it's a part of the democratic process. As needs are presented, and as results happen that are good, the need is ratcheted up - not ratcheted up in a negative way, but it grows.
Q. The movement to put people into the communities - is that continuing to increase?
For those who make that choice, it is. I think the biggest issue that underlies disability advocacy is the principle of choice, being able to choose within the resources available to you, just like anybody else. Where do you want to live? Where do you want to go to school? Where to work? What kind of career choice do you have? That also translates into the environment where you can make the most choices about everyday life, which then translates into the community setting. We're increasing the number of CILAs, for example.
Q. What's a CILA?
Community integrated living arrangement, which may be an apartment with support services for the individual. But from an [American with Disabilities Act] perspective, the issue is really about choice and equality - that I get to pick where I live, that I get to pick where I go to school, that there aren't discriminatory barriers put on me because of the label I may have with a condition.
Think of Stephen Hawking. Do we think this man can't control his activities of daily living? I think not. So choice is really a foundation issue for the independent living movement. And it's an evolution that has occurred as generations have changed their expectation regarding their children with disabilities and their siblings with disabilities.
Q. Can you provide what people want?
I think there's always a tension. But I think what a state can provide, and what Illinois has done, is raise the bar.
When Medicaid first came around, certain things weren't allowed. We couldn't buy you a wheelchair; we couldn't buy you services in your home where a personal assistant would come in and help you get out of bed, help you with grooming tasks or help you maintain household tasks.
The country didn't have a history of doing that. Our way of dealing with individuals with severe disabilities was extremely limited. Your family took care of you as long as they could, in whatever setting they could, or you went into an institution.
Now we have a range of choices that go from the most independent setting to the least independent setting. Some people will always need the institution because their needs and resources are that complex. What we're seeing is a sea change in that fewer people want the institution.
But where's the money that supports these systems, and where should there be change in policy that would more readily support this end of the spectrum?
Q. I realize you're not the agency director or the governor of the state...
But I've got an agency director, Linda Renee Baker, who has said DHS has proved that it can help people go to work through the performance bonuses we got for the work done in TANF [Temporary Assistance to Needy Families, which replaced welfare]. We're going to do the same thing for people with disabilities because the unemployment rate of people with disabilities is scandalous.
Q. What is that unemployment rate?
It ranges from 66 percent to 90 percent. The highest rate of unemployment among people with disabilities is with people of color.
Q. And these are people who are employable?
These are people who are employable and want to work. They want to work.
Q. Why aren't they?
Why do you think? How many people with disabilities work where you work [at the magazine]?
Why? Did you consciously say you're not going to have them?
It just happens. Employers would say, "We don't know where they are, we're not sure how you get to them, we're not sure how you work with them." But we've had success in the state with employers moving from that position through the programs the state makes possible.
Q. I would think the agency has to take an aggressive and assertive advocacy role to meet with employers to help them make these connections.
Definitely. But it's a workforce issue. And it's an inclusive workforce issue.
If I don't know there's the disability access tax credit that allows me a certain write-off if I make renovations to my workplace, the most common being a ramp to the entry, or if I'm providing, for example, an interpreter for the deaf person I've hired, then I may not know how to integrate that person into my setting.
Illinois has a team that can go out, sit down with an employer, look at the work site, look at the job, address supervisor and co-worker questions before the person even shows up. People may say they don't know what to do with a blind person. "How will they know where the vending machines are?" You answer those questions that make folks comfortable, as well as questions that are specifically related to work production.
In addition, you tie into resources, as the secretary has directed us, that help people find qualified candidates. So we try to do the search work for you, and then after you hire the person, we're still there to support the transition.
Q. And the state has trained people who can help with each one of those steps?
Directly through state employees, as well as through agreements with the area's contractors who have expertise.
But I think the real issue is getting over the idea that Audrey McCrimon is a person with a disability and dealing with Audrey McCrimon.
Q. Who can do the job?
Who wants to do the job! Who maybe wants to take your job. But getting over that mind-set is the first piece of it.
Today, we're doing Youth Day. There are youth with disabilities included in this. On a previous Youth Day, I made the mistake of taking one of the students from the School for the Deaf in Jacksonville with me throughout my day. She told me my work was boring, boring, boring - the meetings and the phone calls. But I wanted to demystify what government work at a certain level was about. She actually accompanied me as I made courtesy visits to legislators, so she kind of got a kick out of that part. She had questions for the legislators. I kind of liked that, too.
We are advanced in many ways as a society, but we are the society of the brilliant deception that led to a big fight over whether the Roosevelt Memorial [in Washington, D.C] would depict him in his wheelchair, because there was something about a president in a wheelchair that lost consumer confidence. Look at [the TV show] West Wing. Oh, the president has MS. He might ...what? What might he do?
Q. I asked myself why is it such a big deal that the character on the show has MS. It's not the same thing as a huge scandal.
The major challenge people with disabilities face is that too often people relate to us in our medical categories and titles. So therefore, if we say "Ed" is an MS person, that doesn't tell you about his hobbies, his skills, his functions, his familial relations, whether or not he's a jerk or a good guy. It's just a label - a label that doesn't tell you how the MS affects him. The fear, then, is that you're not whole, you're not complete, you're defective.
Q. What still needs to be done? What do people with disabilities complain about?
Health care coverage. Mental health parity is a big issue.
Q. What is mental health parity?
Mental health parity means Audrey McCrimon has an insurance policy, whether private or otherwise. If Audrey McCrimon develops a mental illness, it's not covered. I can't get service. If Audrey McCrimon breaks her arm, I can get service, [With parity], a mental illness is treated on scale and you still have service caps, but on scale with a physical situation.
Q. Is mental illness considered a disability?
Yes, by all federal laws.
Q. But you, by and large, don't get insurance coverage for it?
Correct. Nationally, this is an issue, a really big one.
We need, in this next go-around, to focus on two key issues, and people will complain. Health care coverage, because even though people with disabilities are no sicker in terms of how often [they get a physical illness], they may use specialists more. They may have to go to that specialist. That has a different cost and a different process. So the health care system's ability to respond to that situation is a challenge for many people with disabilities.
Q. What's the second key issue?
Technology. Technology can be wonderful for bringing more people with disabilities into employment and entrepreneurship if designed accessibly. [The equipment and software has to be accessible to everyone], or you will create a digital divide. Everything we use is digital.
Q. Where does that stand right now for people with disabilities?
The stuff that is possible now is mind-blowing. Example: Arlington Heights' pagers. Arlington Heights gave all the folks in their community who were deaf - everybody who wanted them - weather-alert pagers that do a text printout. Because when they make an announcement on the radio, what are the deaf folks going to do?
Q. Well, they're not going to hear.
So fine. Oh-oh. Storm coming, tornado sighted, whatever, let me get my kids and get to safety, just like the people who heard it on the radio.
Q. The city paid for those pagers?
Yep, and got an award from the national organization on disabilities for doing it. Illinois has won many awards like that for what communities have done in partnership with the people with disabilities in the community.
And TTYs, the telephone system used for deaf people, probably won't exist in the next 10 or 15 years. Why? The Internet will replace them. If everybody's doing e-mail and instant messaging, it replaces a phone call. Right now, if you have e-mail capacity, you can e-mail a deaf person just like you e-mail a hearing person. The Internet gives them equal ground.
The technology is rapidly advancing. The charge is ensuring that how it's built includes rather than excludes.
Q. Is there anything else you'd like to add?
We need to be capitalizing on the talents, the skills and contributions of people with disabilities in this state. We have some unbelievable folks here.
I wish there would become a point where there would be no such label as people with disabilities. It would just be Audrey and Ed. I guess the work we have to do is to get to "just Audrey and Ed."