We are in this togther

A month and a half ago, my wife and I moved into a condominium a few blocks south of our former apartment. A benefit that comes with property ownership and our monthly assessments is basic cable. I have not lived in a home with cable for nearly 20 years, when I shared an apartment with three other former Beloit College students in Chicago's Roger's Park neighborhood.

My wife and I are well aware of the risks that come with cable, primarily the risk that we will spend more time than we previously did in front of the television. No matter how many channels a television carries, wasting time is always a risk. But we used to have about 20 channels from which to choose to waste our time, now we probably have 100 or so.

One such channel to which we have fallen victim is the The Learning Channel. We've been sucked in to the drama built up around the final few episodes of Kate Plus 8. For the last few weeks, I watched Kate and her children, along with the bodyguard, a few of Kate's friends and a few other kids (who I think are the children of one of Kate's friends), travel around the country in two rented recreational vehicles. The two episodes I've watched focus on the tension that escalates between nearly everyone on the trip as a result of spending so much time together within close quarters. Through both episodes, the program foreshadows the point when one of Kate's friends says 'enough is enough, I can't take this anymore,' and makes a b-line for the nearest airport. For two episodes, the program follows the drama to the eventual tipping point, when the parties on the RV's can longer stand to be around each other. To some extent, the episodes remind me of the trips my family made from Madison, Wisconsin to Rockport, Massachusetts. From the time I was three years old until I was 18, every other summer, my family packed up our station wagon then spent two days on the road until we reached the Atlantic Coast, where we then vacationed for a week or two. I have found memories of the long, eight hour days my brothers and I spent in the back seat of the station wagon. Even the memory of my younger brother Steve, when his patience with me had reached its limit, throwing one of my socks out the window makes me smile. But I am sure there were times my mother wished she could have said, 'enough is enough' and left the three boys to fend for themselves.

I guess that is the point of reality television, to chronicle the life of a someone on television in such a way that the experience of the person on television resonates with the viewers. But the tension that developed as a result of so many people spending two weeks together in a RV isn't what really resonated with me. What really resonated with me were the numerous times throughout the two episodes that Kate complained about strangers taking uninvited photos of her and her kids. The episodes didn't include footage of the strangers taking pictures, only the aftermath of Kate complaining about the pictures. It happened once in the evening at a public camp ground. While Kate and her entourage of children and friends argued about whether or not to order pizza for dinner, Kate turned to her bodyguard and asked something like, 'and are you going to deal with what happened back there?' Kate was referring to some other campers or possibly some groupies who were following the RV's across the country and had taken some unauthorized photos. Kate wanted the bodyguard to confront the strangers and either retrieve the photos or at the least give the strangers a good scolding. Basically, the bodyguard said, 'no, I am not going to do it.' Perhaps the bodyguard said that because retrieving unauthorized photos was not in his job description. But he also might have answered that way because he believed either there was nothing he could do, or because he believed making a big deal of the photos would not be worth the effort.

On several occasions, if not more, I've written about people taking my photo without my permission, not because I am a celebrity like Kate and his kids, but because people believe dwarfs are funny looking. And I know that other people of short stature have had similar experiences. It is very frustrating experience. Part of the frustration comes with the fact that one's privacy is invaded, and part of the frustration stems from anger around the intent of the photos. But for me in any case, another part of the frustration revolves around trying to figure out the best response. Often the times, the photos churn up such anger in side of me that I want to retaliate in order to share that anger with the perpetrators. Typically though, if I do retaliate, I end up more worked up and more angry than I was originally. Sometimes I feel like I should let it go. If I do, I am able to get through my anger more quickly than if I would have responded. But not retaliating makes me worry that the perpetrator believes it is something he or she can get away with.

Watching the episode of Kate Plus Eight didn't answer any questions for me. I did not learn which way to respond is best. But the episode made me feel a little better. I did not reveal in the fact that somebody else, besides myself and other people of short stature, have to deal with unauthorized images. But the answer confirmed for me the fact that there is no good way to respond. Not doing anything is not going to make one feel better. And retaliating is not going to make one feel better. I wish there were an answer to how to deal with the situation. But until there is, I feel better knowing that people of short stature are not alone.

Freedom of Choice

On August 29, Access Living, the organization I work for, as part of a coalition that also includes Equip for Equality, the ACLU of Chicago, Steve Gold and SNR Denton, filed a class-action settlement on behalf of people with disabilities living in nursing homes in Cook County, Illinois. When approved by the Court, the settlement will give people with disabilities in nursing homes the choice to receive Medicaid supports in their own apartments instead of nursing homes. If implemented well, the settlement will give people with disabilities what the Americans with Disabilities and the Olmstead U.S. Supreme Court decision originally intended, the choice to live independently and in an integrated community. Historically, people with disabilities have been segregated from the general population, warehoused in institutions like nursing homes because integrated services did not exist, and because political and monetary interests resisted change.

The problem with this kind of system is that thousands of people with disabilities are in nursing homes for no reason. The supports people need, like personal assistant help, could just as easily, be provided in a person's own apartment. Nursing homes cost more money than services in the community, and often times they increase the isolation and decrease the quality of life for people forced to move in because other support options can not be found.

Within the first two years of the settlement process, more than 1,000 people with disabilities will transition out of nursing homes and into community-based apartments. That number may not sound large within the context of the settlement class -- 20,000 people -- but to give it some perspective, Access Living runs a program that works one on one with people with disabilities in nursing homes, giving them the resources they need to move out. Because the system in Illinois is set up in such a way that the majority of resources are funneled into institutions, just more than 250 people have transitioned out of nursing homes since 1998, when the program started. Basically, in order to move people out, Access Living has to work against the grain of the system. The goal of Colbert v. Quinn, the class action settlement signed on August 29, is to change the system in Illinois. With this settlement, thousands of people in nursing homes will be offered quality community-based support services in their own homes. Now, when people choose to move out of an institution, they will no longer be forced against the grain of the system.

The morning after the filing, Access Living hosted a news conference for media to announce the settlement. The afternoon before, and the morning of the news conference, I sent an email to Access Living staff, briefing them about the settlement and the media event. About an hour or so before the media event, I was in the Access Living break room. While I poured some coffee, a co-worker of mine named Jim walked into the break room. Jim has many years of experience working on community integration issues (changing long term care systems in order to allow more people with disabilities to get services in their own homes instead of institutions) with ADAPT and with Access Living. Jim mentioned the settlement. He said something like, "this is great. I wonder if everyone understands just how huge this is?"

Hearing this from Jim was great. He had spent many years participating in civil disobedience and direct action protests on behalf of people with disabilities whose civil rights had been violated because they were segregated unnecessarily in nursing homes. Though the Colbert agreement is a great step forward, the agreement is a legal settlement. The disability legal coalition had to negotiate in order to reach an agreement with the defendant, the State of Illinois. There was some concern over how some disability advocates, like Jim, would respond to a few of the settlement details that came out of the negotiations.

Jim's question -- how huge is this?- echoed in my ear later that morning. About half an hour after speaking with Jim, I was in the office of Access Living's President, Marca Bristo. Marca has more than three decades within the disability rights movement. Among many other resume builders, she was a part of negotiations that brought forward the Americans with Disabilities Act. Marca was scheduled to speak at the news conference. We were discussing her talking points and the over all agenda for the media event. My cell phone rang. It was a local television station. When I arrived at the office that morning, the first thing I did was email, then call, local television and radio stations, inviting them to the media event. An assignment editor from one of the stations called me back while I was in Marca's office. He had a few questions about the settlement before the media event. He asked about Medicaid in Illinois. He asked about how the long-term care system worked for people with disabilities in Illinois. He asked about how many people the settlement might impact. After a few questions and answers, the assignment editor paused. There was silence over the phone for a few moments. Then the man said, "this is pretty huge, isn't it?"
"Yes," I answered. "It is."

I've worked at Access Living for a long time. I really enjoy the job, and often times the job is very satisfying and fulfilling. But I am hard pressed to remember a moment as gratifying as last Tuesday morning, when the assignment editor for the local television station said, 'this is huge...', grasping what kind of impact the Colbert settlement will have on the Illinois Disability Community.