Do Perceptions Matter?

I am of the firm belief that on an individual basis, it does not matter what people think about you. You can’t spend your life worrying about what other people think about you or the way you live. So, do perceptions matter? I’ve come to realize that in some ways, they do. Sure, not on an individual, case by case basis, but in the grand scheme of things, perceptions can determine whether a group of people get fair treatment. In some ways we should give a hoot about the perceptions the world has of us.

I might not be explaining myself as clearly as I should, so let me give you an example. I am not exactly getting the point of civil disobedience in this day and age. The same people who are telling me that the world should be civilized enough to keep serial killers and pedophiles in prison (more on this later), as opposed to the death penalty, feel it is okay to go out and cause civil disobedience. I’m not sure I understand what is so civilized about this.

I can see why civil disobedience was big in the 60s. Everyone was out burning bras, chaining themselves to buildings, and causing a ruckus with the police. They were also on a lot of Acid, Weed, and other drugs. There really was no civility in the time of free love, and perhaps our nation has become more conservative and conventional, but I don’t see how civil disobedience, in this day and age, is going to make anyone’s perception of a specific group positive. In fact, because we live in a more conservative nation, I feel the perception is, more often than not, negative.

Going even further, let me explain what got me thinking about this. ADAPT hosted/is hosting a week of events in Washington D.C. to protest Obama’s slowness in getting the Community Choice Act (CCA) through Congress and on his desk. Granted, Obama did promise those of us in the disabled community this bill, and he has been sluggish in getting things going for the CCA, but he has one heck of a mess to clean up in this nation and a lot of other promises to uphold. It is going to take time and ADAPT is demanding answers now.

I’m not saying I’m happy with Obama. I voted for Obama partly because I felt McCain was just more Bush and partly because he was the only one who claimed he supported the political actions I support. Like everyone else, I’m waiting with baited breath to see if he can get things together. Yes, he’s been in office just over 100 days, but that’s a small amount of time to clean up 8 years of terrible economic practices. I think we all need to use some patience and give him time to figure out what to do, how to do it, and how to implement it. If by the end of four years he hasn’t kept his promises then we’ll know what kind of president, what kind of man, he really is.

I digress. This has only a little to do with perceptions. I am just trying to give my thoughts on the ADAPT actions, so you can see where I am coming from. I’ve been told ADAPT has a long history of civil disobedience action. They used it to pass the ADA (perhaps the most archaic Act in the history of Congress) and to help get public transportation for all (I don’t think enough has been done for this — but that’s just from someone who depends on accessible, public transportation that is unreliable). Perhaps in 1990, civil disobedience worked, but that is almost 20 years ago. Perceptions change.

I have National ADAPT on my Twitter. Throughout the last few days, my twitter stream has been filled with updates on the action. People in wheelchairs (close to 500 — in total) chained themselves to the White House fence. They blocked the entrance to the White House so visitors either had to cancel appointments or go to another entrance on the opposite side of the White House. They crawled up the steps of the Capitol. They were getting arrested, proudly, left and right. For what? Media attention.

Yes, this did get more media attention than the Jerry Lewis protest in California a few months back, but the perceptions of average Americans to this civil disobedience is not positive. On the whole, its negative. Just go look at the comments in newspapers carrying the story or on various Twitter streams of those finding amusement in the action. People don’t get why the disabled populace is breaking the law and getting arrested. In the end, the true reason behind it all, passing the Community Choice Act (a bill necessary and essential to keeping those of us in wheelchairs who require care in our homes and out of nursing homes) is lost in the muddle.

Furthermore, we need the support of the majority. With majority support the CCA has a better chance of being passed. The perceptions of the majority matter because they help this essential bill come to fruition. The majority needs to help us email Congress, Obama, and demand the bill pass. If the majority sees us in a negative light, they won’t care if Obama is held accountable for his promise or not, and that, to me is a problem.

People think we’re whiners who just want our way. They believe that we expect too much of Obama. They believe the civil disobedience is pointless. We’re crazy. We’re greedy. We’re selfish for not following proper protocols (the protesters didn’t even file a petition to picket/protest in front of the White House — something they could have done). In fact, the only people who find this amusing or think its great are those who don’t like Obama. Suddenly, Obama hates people with disabilities (according to them). Most of these people are from the Conservative Right.

My thoughts on this are that there are more conventional ways to get the issue in the news. We have a three-section government for a reason. When something doesn’t work out with the Executive Branch, it’s good to appeal to the Legislative Branch. If that doesn’t work we always have the Judicial Branch to fall back upon. How many lawsuits have been filed in the past to bring an issue to the forefront? I wonder why this wasn’t considered before going to the Capitol and crawling up a bunch of steps?

I find it hard to be proud of this action. Yes, I agree something does need to be done, but I don’t agree with the methods employed in order to get action. As far as I know, nothing has been accomplished other than to get the story into the mainstream media, and raise the blood pressures of the majority who don’t agree with 1960s-esque, radical picketing tactics. To me, the entire thing is pointless. Negative attention is worse than no attention, especially when it comes to the support of a bill, such as the CCA.

So, do perceptions matter? Do you think that the disability rights movement should care about what the majority thinks in order to garner their support for the cause? I believe that with the disabled being one of the most discriminated groups in the nation, we do need the majority’s support. Without their understanding of our situation, we won’t get that and civil disobedience is no way to go about changing perceptions, for the better.

[tags]perceptions, disability, civil disobedience, Community Choice Act, CCA, picket, Congress, Obama, discrimination[/tags]

17 responses to “Do Perceptions Matter?”

  1. Wow…

    As someone who has lived their whole life with a disability, I’m surprised you don’t realize how easy it is for society to put PWD’s on the sideline and forget them. If it hadn’t been for the actions of ADAPT and others who fought along with them, then even the somewhat unreliable public transportation you use would not exist. Nor would your right to have access to public places such as the court house, movie theater, art museum, schools etc. Let’s not forget the right to accommodations in the work place. Granted the ADA has been stripped of some of its power, but it is still the foundation of civil rights for people with disabilities.

    Now, about the CCA. I’m not sure you realize that this bill (under other names but with the same intent) has been floating around Congress for well over 10 years. It was ignored by the end of the Clinton administration, during all of Bush’s years (BTW Daddy Bush is the one who signed the ADA into law), and is now being marginalized by this administration. The actions of ADAPT members not only force the issue back into the media spotlight, they play out the years of frustration at not having the desires of a whole group of American’s respected. These actions mourn those who have died in institutions where they were warehoused as a commodity and not treated as equal citizens. These actions are not only trying to protect you from the possibility of being forced into a nursing home, they are trying to protect me, my neighbors, and yes even the most negative, narrow-minded conservatives from being forced to live the last years of our lives in a place where we are not respected or comfortable. It seems that you forget that the largest segment of people forced into institutions is the elderly, and for most of us aging is an inescapable reality.

    So, if you are uncomfortable with ADAPT’s civil disobedience then don’t go to an action. Just remember though, that when you can take public transportation, go out and about in your community, live in your own home with the supports you need and basically enjoy all the freedoms and benefits of a society that SHOULD include people of all abilities and ages together, that there were people who gave their blood, sweat, tears, voices, pain and lives to earn you those rights.

  2. Hi Dom,
    I am glad that you are writing about the CCA, and encouraging people to contact Senators, Representatives and the President to push for its passage. The only way we will get CCA passed is to put as much pressure on our elected officials as we possibly can, because they have told us in no uncertain terms that long-term services and supports are very much on the back burner….as they have been for the 18 years that ADAPT has been working for passage of CCA legislation.

    As for ADAPT and our use of civil disobedience, here are a few pieces of information that you may not be aware of.

    1. Not sure if you personally are independently wealthy, but most of us are not…we don’t have the power and influence that comes with money, and we don’t have enough people in positions of power to have influence that way….so, the best way to get our issues in front of the public is to use the media, and one way to command media attention is through civil disobedience.

    2. The use of civil disobedience has resulted in ADAPT getting regular meetings with many federal officials over the years. Those meetings have resulted in many of the Medicaid Systems Change Grants that have continued to demonstrate the efficacy of home and community-based services, a gradual increase in community funding, and the passage in the Deficit Reduction Act a couple of years ago of the Money Follows the Person grants to states. If you doubt any of what we have accomplished through the use of civil disobedience to get attention to our issue, listen to the interview on NPR with Mark McClellan, former Director of the HHS Centers for Medicare and Medicaid in the Bush Administration. He was sent from the White House a few years ago to deal with the “rabble-rousers” chained to the White House fence. He came out, listened to what we had to say, and actually “heard” us….so when he was appointed to the CMS position he followed through and got the Money Follows the Person grants into law. In the NPR interview, he gives ADAPT and our civil disobedience the credit.

    3. While ADAPT is very skilled in the use of non-violent civil disobedience, most of the year we are meeting with people in power, testifying in legislatures and Congress, writing letters, talking to politicians, and more. Many of us understand the policy better than government folks.

    4. People with disabilities in many states are forced into nursing homes and institutions by the institutional bias in Medicaid law. Countless thousands have died waiting for their freedom, countless thousands more are still waiting, incarcerated for the crime of disability with no hope of release, and even more of us aging baby boomers live with the threat of nursing homes in our futures. How can anyone expect us to be “polite” and to keep waiting after we have already waited so many years, some of us having never experienced the freedom that most of America takes for granted? How can anyone not be outraged at so many of our brothers and sisters not being able to live free lives in their own homes and communities? How can YOU not be outraged at this? For those of us who are outraged, it is impossible to sit by quietly and adopt a wait and see attitude. There is nothing more important than basic freedom in this country, and freedom doesn’t just belong to the “able-bodied” or those who are fortunate enough to have the means or family to stay in the community, or who live in the right state.

    5. Without exception, in every place we have protested, we get people coming up to us on the street to say they saw us on TV or in the paper and they want us to know they support us because they had/have a brother/sister/grandma/grandpa/favorite aunt/parent/friend or someone else they know who has been forced into a nursing home because they couldn’t get home and community-based services and supports in their state. Even the police are typically supportive of us….once they talk with us, they realize that they are all only one bullet or accident away from being in our position, and that no matter how good their insurance is, it doesn’t cover in-home personal assistance, and they, too, are at risk for being forced into nursing homes. We had some very good coverage in D.C., and our civil disobedience and coverage in Nashville a couple of years ago resulted in statewide policy changes in personal assistance.

    6. In order to get CCA passed, it will take ALL of us….the letter writers, the testifiers, the committee and task force members, the traditional groups, the edgier groups, our friends, relatives, neighbors…..from the suites to the streets. As Frederick Douglass so wisely said “Power concedes nothing without a struggle…” so however we do it, in all the various ways we do it, we must DEMAND our rights, because simply waiting for the right thing to happen just doesn’t work, as you so rightly pointed out when you mentioned your ongoing problems with accessible transportation.

    Keep pushing for CCA, and working together, let’s make sure that 2009 is the year it FINALLY happens!

  3. Dominick,
    In an interesting way, you have laid out the perfect reason why civil disobedience is still needed, though the way you get there is a bit convoluted, in my opinion. First, let me briefly address your issue of “perception.” Do I care what other people think of me? No, not really. Do I expect to have the same rights, choices and respect that others get? Absolutely! I am not sure how much you know of the history of the Community Choice Act, or its predecessor, MiCASSA–Medicaid Community-based Attendant Services and Supports Act. ADAPT, AND others, have been working on this since the passage of ADA.
    Part of the reason why many people like yourself don’t understand or agree with what you see ADAPT doing is because you don’t see all that they do. You don’t see the meetings they sit in on, are invited to (because of their knowledge, passion and yes, what might come next,) ADAPT folks have met with the new Secretary of HUD re: housing, have been in several meetings with other disability groups re: the President’s agenda for people with disabilities. This whole action started with a meeting between members of ADAPT (I happened to be in the meeting) and Obama’s Health Czar, Nancy Ann DeParle and others within the administration.
    We wanted to see what Obama’s plan was for CCA. Did he still support it, as he has done since before becoming an US Senator? Was he going to push to have it included in the impending Health Care Reform? What was the plan?
    It was clear from the beginning that Obama intends to make sure the 47 million people without insurance get covered–something we certainly aren’t opposed to, but absolutely would not be including Long Term Services and Supports in the Reform. They don’t see it as health care. (Frankly, we don’t either. It’s about civil rights, but since the majority of LTSS is paid for with Medicaid and Medicare, it absolutely belongs in the Health Care Reform) They want to pass Health Reform, demonstrating to America it works and then get back to us. Like your transportation issues, I am tired of waiting and don’t want to die in a F….ng nursing home waiting for the institutional bias to be removed from Medicaid.
    I think that gives a bit more about CCA, and I would like to spend some time on your “perception” of civil disobedience. The idea that civil disobedience happened in the 60’s because everybody was high is SO ludicrous, it makes me laugh and cry at the same time. Do you realize that this country was founded on civil disobedience? The Boston Tea Party was civil disobedience, and not because of how we thought the British “perceived” us, but because of how we were being treated by them. We wanted representation for our taxes!!!
    Ghandi and Martin Luther King, Jr. engaged in civil disobedience to bring light to the injustices of the world–how people were treated in India and elsewhere, or African-Americans and others in America. And yes, there were women burning their bras in protest against disparities between the sexes, protests against Vietnam. nuclear proliferation and a host of other things. I have protested in many parts of this country, and I am continually amazed when I come across someone who protested in the 60’s or 70’s and gets pissed off because NOW they are the one who inconvenienced, not the one doing the inconveniencing.
    We do not enjoy what we feel we have to do (at least I don’t), but we do enjoy the comraderie and sense of family while we are protesting. Unfortunately, this comes across as though we are joking about it, but we aren’t. Most of the people on the streets are people who have been in various forms of institutions and are willing to get arrested to bring about change in this country, and most would truly rather die than go back to a nursing home or other incarcerating facility.
    I know there are those who disparage what we do when we engage in civil disobedience, especially those who don’t agree with our point of view. BUT, if you were with us and saw/talked to the people who walked by and read our leaflets, you would see that the public understands that what we are saying is right and that we need to keep doing what we are doing to bring about change.
    The only thing I think I can truly agree with you on is that we do need to get the broader public aware of this issue, and we are. I have been working in this arena for almost 30 years, getting people out of nursing homes and other institutions and getting them into their own homes–does not include mini-institutions like group homes. I have also talked to a lot of people in the public, without disabilities, and I have NEVER had anyone tell me they wanted to live in a nursing home. Everyone sees them as a place to go to die.
    From your views on ADA (not really sure of the view, though you obviously think it needs to be changed), transportation and other issues affecting people with disabilities, clearly sitting on your butt, blogging is not bringing about change. We do need all forms of communication to bring about change, including getting into the faces of people who oppress us, including those who will not give us our rights.

  4. Wow. I don’t know if you seem to think I’m putting down the work of ADAPT, but I understand that ‘back in the day’ civil disobedience did have its place (did you read my whole article?). I’m saying, in today’s society, I’m not sure how much good it will do. It’s actually forcing the majority against the minority (in this case — us in wheelchairs). Not nice to see people protesting called ‘morons’ or ‘instigators’ or any other negative names. Sadly, all the action has seemed to do has put the issue in the news for one day with generally negative opinions expressed on the action by media, government, and the majority of Americans. My question is, couldn’t there be another way to actually get something accomplished, because I don’t feel civil disobedience has an effect anymore?

    I am fully aware that CCA affects the elderly, as well. As I am not elderly, and my article was mainly about the disability aspect of the CCA, I neglected to mention that. I suppose that is my bad.

    I understand that the ADA and other legislation was passed, but it hasn’t done that much. There is so much more that could have been done. I know plenty of buildings (open to the public) that are inaccessible. Many of them get away with it on a technicality. I recall in college not being able to go to the club with friends because it was up a flight of steps. The owners response, “Fuck the ADA. My building is old enough. I don’t have to make my club accessible,” kind of sums of the opinion of building owners holding out on accessibilizing. To this day, it’s still not available to everyone due to inaccessibility.

    Also, when I say unreliable transportation, I’m saying, there might as well not even be any type of public transport. I’m having to scrape together the cash for a $40K+ wheelchair accessible vehicle because it sucks only getting out of the house once or twice a year. We shouldn’t have to just settle for sub-standard legislation. Sure, we need something done for fair and equal treatment, but I don’t think anything is getting done effectively thanks to the way it was been/has been handled in Washington.

  5. I just want to make one thing clear. I didn’t say I disagree with what ADAPT does on the whole. I am sure there is a lot of other things going on besides civil disobedience protests. I just don’t agree with the civil disobedience part. That’s where I believe ADAPT is going wrong. The society we live in isn’t susceptible to civil disobedience the way it was in the 60s, 70s, 80s and even the 90s.

    Upon looking up the topic of civil disobedience in this society, I came across this forum. It seems I’m not alone in thinking civil disobedience is an archaic way to get an issue into the media (positively) and change issues within government:

    It’s an interesting read!

    Also, I want all those freedoms/rights everyone else has, too. I’m not rich. I live in an inaccessible home where I can get in exactly one room in my chair. Since I went into a wheelchair 12 years ago, I have only had an accessible bathroom once (at college). I had trouble getting a ramp for my house, so I was stuck inside for five months until I got one (the disability network here makes false claims about who they’ll help — I’m not one they do). I don’t get out much due to lack of public transport (I don’t live on a bus route), and everything is about 20x more expensive — especially when not covered by that great government based insurance I get (which frequently happens). I’ve had to advocate for everything I have or will have, so I’m fully aware of the lack of equality for those with disabilities. I’m not going out and chaining myself to a fence though, to get what I need.

    • There were some interesting points on the “civil disobedience” site you posted. It’s interesting that most people who thought where it worked best was in the civil rights movement and places where “obvious injustices” are in effect. I think you would agree, there are severe injustices when it comes to how/what those of us with disabilities get, put up with, are deprived, etc.. Just the examples you mention.

      What I don’t understand (and you certainly haven’t convinced me that civil disobedience doesn’t work) is what do you think would work that hasn’t been tried? I know you don’t think much of the ADA, but it is what we have and if the feds would enforce it, it would mean much more. But if not for civil disobedience, the ADA would never have passed. It took ADAPT folks and others crawling up the Capitol steps to engage Congress to sign it. If not for civil disobedience, the regulations for Section 504 of the Rehab Act would never have been written and guidance given as to what expectations are for government agencies and those receiving federal dollars.

      At the CO site, people seemed to think civil disobedience didn’t work because it is so difficult to get the “shock value” needed for change. 500 people in wheelchairs protesting 100 of which get arrested is SHOCKING to the public and as Marsha pointed out, we have gotten positive outcomes from the activities–Systems Change Grants, Money Follows the Person, targeted Section 8 vouchers for pwd’s, etc.

      I would welcome alternative strategies you think would work, that haven’t been tried. And as pointed out previously, its not that CO is all that ADAPT does. We write, call and go to too many meetings to get the change we need and will continue to do so.


  6. Dominick,

    Given all the access you lack, and the problems you have been surviving/dealing with for so many years, I can’t help but wonder why you aren’t outraged at not having the same rights everyone else does, and why you continue to be so patient waiting for the government and landlords, and public transit, etc. to do the right thing. I know I don’t have your patience. You and all of us should NOT have to wait forever in polite silence (or even while doing repeated and painstaking self-advocacy) for our civil rights. They are long past due!

    Not sure if you read MY whole post, because I think I mentioned just a few of many gains and steps forward that have occurred as direct result of ADAPT’s civil disobedience. The fact that funding has increased for home and community-based services in the last 15 years is a direct result of ADAPT’s civil disobedience and persistent activism.

    If you read the papers last week you may also have read that several Congress people got arrested committing civil disobedience re:Darfur, and Green Peace was in D.C. committing civil disobedience, as were a ton of people re: International Money Fund.

    It keeps happening because it DOES work…not alone, but in concert with all the other methods of advocacy and activism we have in our toolbox.

    It’s fine that civil disobedience is not your cup of tea. You are obviously very bright and can do a lot with the use of your pen/keyboard/public speaking, etc. But for some of us, in addition to the pen, keyboard, and public speaking, we also make it clear that we expect no policy about us to be made without us, and if we aren’t consulted, and if our letters and calls and requests for meetings aren’t responded to, we are going to find a way to make sure that someone else isn’t making decisions about our lives in our absence, supposedly “in our best interest.”

    You may never be moved to commit civil disobedience, but I hope you have or will consider filing complaint and/or lawsuits against people who deny you access. Don’t take for granted what people like the club owner say about the ADA…he was not necessarily correct, and you could well have an actionable cause. Same goes for repeated instances of not-working, not-available public transit.

    If you need an accessble van for work, both VR(MRS), and or a PASS plan might help (if you get disability benefits). If you are eligible for Medicaid, then a Medicaid waiver may also help with a van, and making your home more accessible.

    You may not want to commit civil disobedience to get what you want and need, but from your post, I’m not sure what you have been doing is working…’s hoping that changes because you certainly deserve so much more than you have now in terms of access!

    Still believe we are on the same team….just playing different positions, : )

  7. I just wanted to add one thing – sitting on my butt (writing letters to my legislature, the president, making calls, etc.) and blogging is actually a better way to get the word out about CCA. Blogging is and has been deemed the new way to find out about the news/issues/hot topics. In fact, they say blogging is replacing mainstream media. More people read blogs then they do newspapers.

    Furthermore, I can’t stand up, so sorry if my sitting on my butt offends you 🙂

    Not all of us are able to travel. I can’t fly on a plane (they aren’t accessible — I’m incapable of transferring without my Hoyer) and I have no vehicle. That public transport I speak of doesn’t leave my county either, and there isn’t much going on in my county. Kind of funny you’d condemn what a person in a wheelchair is capable of doing, as being ‘not enough’ simply because I’m not out there physically protesting (especially when its clear…I can’t currently – though why would I want to when it is those making such condemnations who are out protesting).

    Just like people are trapped in nursing homes, there are plenty of us who are trapped in our houses, too.

    • Just as an aside to this whole conversation, I’m curious as to why you feel you can’t fly? My husband uses a wheelchair and a ventilator. He also uses a Hoyer to transfer as well as having permanent contractures of all extremities. We have flown across the country twice with no problems. All it takes is a little advanced planning and the desire to get where you want to go. It is possible.

  8. Marsha,

    I am outraged that I have to fight for everything I get through painstaking methods, but I don’t believe I need to whine about the things I don’t have. I am also outraged about the poor economy, poor children who go hungry, homelessness, the unemployment rate, and various other issues in this nation. As bad as I have it, I’m not starving. I’m not 3 and without a home. I’m not living on the street because I’ve lost my home. My house seriously sucks, but at least I have a home — so I can have the patience to advocate for myself until I work for the things I need.

    I know about PASS. I was on it before I got injured (I fell out of my wheelchair — I’ve spent much of the past five years bed ridden as a result of my injury). Since I had to drop out of school to recover, I lost my PASS and my van. I have been patiently waiting until I can return to college and enduring intense physical therapy to be able to be in my wheelchair every single day. Sure, I’m outraged, but all I believe I can do is keep plucking forward until I can finally return to college to finish my degree. No sense in letting my outrage eat me up.

    I’ve had discrimination happen my entire life. I was discriminated against in school. I only had two or three IEPs to my knowledge. I later learned that I was supposed to have them every year. I was denied an Aide in school (no IEP — no need), faced discrimination to the point where a disability advocacy group had to get involved or my doctor wouldn’t let me return to school (when the organization sided with the school and I told them to basically f– off since they weren’t punishing those who were responsible for the discrimination — I was told I had to return anyway or face failing), had to go to High School because my Jr. High wasn’t accessible (which led to much hatred from my peers who also had to go to our High School building for classes they had with me) and had many other problems. By the time I knew my rights, it was too late to sue. We live and learn from these lessons.

    My caregiver gets paid less than minimum wage. I was denied any help from my Medicaid care services (they claim they can’t even pay $600-$800 for my Hoyer motor – imagine help for a van) even though they told me they have paid for equipment in the past for others. I live 2 minutes from the Disability Network office in my area, but was told I’m out of the city limits, so I couldn’t get assistance with a ramp. I was denied help by HUD and eventually had to get my ramp donated by a Catholic church. They guy who made the ramp promised to seal it, but never did, so it is already starting to rot/fall apart.

    Sure, I’m outraged about these things. Yes, things need to be changed, but I am not out creating a ruckus to get my issue out into the media. I blog, spread my thoughts online, call my elected officials, heck I’ve even met with them when I did have transport (back in the day). I also work to get myself these things. Blogging does help pay my bills.

    The ADA could have been so much more, ensuring true freedom in any and every public building regardless of the buildings age. Heck, I fought the first University I attended (I went directly to the press — I was somewhat known in my area from being a former MDA poster child) over accessibility issues. They spent their funding to put an elevator up to the alumni seating in their football stadium, which outraged me. I fought them the entire year I attended, trying to hold them to their promises they made when I signed up to attend the school — and it had quite a bit of media attention, but I eventually said F– em and went to the more accessible Wright State the following year. For all the media attention was worth, the University was never held accountable. I found a better option.

    I am outraged. I do care that the CCA is passed, but I won’t be out causing trouble to get it passed. That’s just the way I roll.

  9. Bob —

    I believe some of the action ADAPT is taking is great. Phone calls, emails, spreading the word on blogs, twitter, Facebook, and across the web gets the word out. The web is the wave of the future for transporting information and taking action. Meeting with officials, speaking before Congress, passing out pamphlets, etc. That all is great. I do believe in peaceful protests to an extent, but not as far as civil disobedience.

    The media is reporting ADAPT did not get a permit to protest in front of the White House (which is a group’s right). My question — why not? If you could have done that, why not legitimize the effort? I think this just adds to the rebel mentality. You chose not to get the permit even though it was clear there was probably going to be a protest. Protesting is a right of expression in this country, and it should be exercised when necessary, but there are procedures and protocols that should have been adhered to.

    You guys wanted to be arrested. You wanted to cause a ruckus/trouble in Washington, so you didn’t follow the proper procedures. Where do you draw the line between being civilly disobedient and unlawful, illegal acts? What you were doing was illegal because you didn’t follow said procedures, which is why some of you did get arrested. Wouldn’t it have been better to protest and be able to continue to protest….thanks to the fact that you did follow said procedures?

    I don’t think people found 500 people in wheelchairs protesting without a permit and getting arrested for it shocking. Most who commented on it (online) found it idiotic. That’s not what ADAPT should want them to think. I don’t think they should feel that way, because I do want some in the majority to support CCA and to realize it can/will affect them in some way, too. I don’t think the protest got the message across to them, because what you think is shocking seems silly and pointless to the majority.

    I’m not 100% sure what the right answer is to get them on our side, but I can say if they are there then the government will have no choice but to act. They can’t quiet an entire nation…just the minority.

    • Dom,
      Civil disobedience, by its very nature, is against the law. If you don’t think 500 people protesting w/o a permit doesn’t get attention, what attention do you think we would have gotten from sitting quietly with posters in hand. Yes, we knew there was a chance of being arrested, even a probability. But for one, I can tell you I REALLY was hoping that we would have come out of the meeting with the health care czar with a positive message. If that would have been the case, we would have packed up and gone on our way to another target to try to get support.
      We get permits to march to where we are going. in 1993, when we marched from Philly to DC–144 miles over 14 days–we got permits for every foot we walked/wheeled. But this and other actions are different. We often don’t know where we are going until the last minute, and you can’t get a permit at the last minute.
      It is clear we are not going to agree on this, so it doesn’t make sense to keep trying to make you understand. I believe it works, I have seen the positive outcomes, and will continue to use it in the arsenal of tactics we must use to make change in this society.
      Regarding the “sitting on your butt blogging” statement…after twenty years or more of computer use, I continue to get myself in trouble with sarcastic comments that don’t relate over e-mail. I have been using a wheelchair for almost 40 years and have one sore butt from it. I agree with you re: the powerful nature of blogging and using the internet for so very much in getting the message out. I had just got done reading a bunch of comments from the abcnewsblog that Jake Tapper did on the White House action, which was quite good and got a good message out, but the responders were just lame with some comments, so, sorry you got the brunt of that.

      Obviously, I don’t know a lot about you or your situation. From what you have written, you don’t get out much for various reasons, none of which sound fair or justified. No one should be “locked” literally or figuratively in their home because of lack of services. Clearly, things have gotten worse in MI than when I was there 12 years ago. I worked at one CIL, didn’t think much of it. There are a few good ones, most marginal and some downright pathetic, so sorry you seem to be in the bad area.

      It’s too bad you are not able to travel more. Must be from the “fall” injury? We have folks at ADAPT actions that are on respirators, use sip’n’puff wheelchairs, HELL, Ed Roberts was in an iron lung for a good part of his life and traveled the world, so I know pretty much everyone “can” travel, its just having the proper supports in place to make it happen. Many of Jerry’s Orphans are on the line with us, so would think they would have similar needs. Anyway, not for me to make assessment/judgement online….

      Keep up your work and we’ll do the same and let’s hope something works sometime soon.


  10. I was told when I spoke to the airline that I had to transfer into a seat (and with no Hoyer lift being allowed on — who wants to lug one around on vacation anyway? — still I could rent one once I got to my destination – but the airlines said no Hoyers?). I can’t transfer without a Hoyer. I’ve asked many friends in wheelchairs how they travel by plane and all of them say the same thing — they are lifted into the seat by family or friends. I don’t have anyone who can lift me, and with my leg being sensitive ever since it was fractured — part of my injury when I fell, I wouldn’t want to be lifted by anyone. So, we just don’t fly anywhere. I’ve heard a few others with Hoyers (and no lifting) who say they can’t fly either. If your husband has a way that works I would very much like to know.

    I have been invited to conferences for work in California (and elsewhere), but have been unable to go due to lack of transportation. So, if there is a solution to the flying problem, I’d love to know!

  11. I can’t travel because the only transportation I have right now is the county’s public transportation service, which won’t leave our county. It is terrible. I am ADA so I am supposed to be able to call within one day and travel, but they are always very nosy about where I am going and why, don’t want to take me anywhere social (I can go to the drs but I get, we have others who have more important appointments when I want to say, take my son to a festival or something, so they either pack the van so full you can barely fit — you miss your trip — or they make you wait over an hour for your rides) and their drivers are unreliable.

    I’ve been tied down wrong. I’ve had drivers drive maliciously knowing I’m sensitive to bumps (and laughing about it). I’ve reported them (only to have them reprimanded — so they refused to talk to me or help me put my money in the slot since I was the reason they got in trouble) and re-reported them. Finally, I just said f-it. The Disability Network in town doesn’t give a crap (the FBI actually confiscated stuff from their office — they too have been in hot water) and it is so much trouble to get a ride, I only go out if I have to. Luckily, my doctor comes to my house as does my PT.

    There is one other transport service. It will take you outside the county, but only for doctors appointments. The days they run are limited. They are relatively inexpensive, but you have to schedule your appointment at least one month in advance. Needless to say, I very rarely use their service, but they are more reliable/friendly than the in county transport.

    My county is the very worst for disability rights offering and assistance. It’s a joke here.

  12. Just fyi… (read Senator Harkin’s statement about civil disobedience)

    Second “Nick’s Crusade” Video Blog: ADAPT Action and the Olmstead Decision
    Posted by nickdupree – April 29, 2009

    Transcription (as captioned):

    This is Nick, of Nick’s Crusade blog. This is day 243 of me being in an institution in this lovely blue hospital gown. Right now, ADAPT activists are protesting in Washington, DC to end unnecessary institutionalization, like I’m experiencing, and making care available in the community.

    10 years ago, there was a lawsuit that went to the Supreme Court about two women, Lois and Elaine, who, for no apparent reason, just because they had mild disabilities, were stuck an institution in Georgia. The Supreme Court ruled 10 years ago that under the Americans with Disabilities Act, unnecessarily institutionalizing people is illegal, and that we deserve, and have a right to, our services in the most integrated setting. So this case, this Olmstead decision, got Lois and Elaine out of the institution. And right now, Lois is protesting in Washington with ADAPT.

    With millions of people still in institutions, when they don’t need to be, the promise of Olmstead has been a lie. The states have not implemented Olmstead, and it’s ridiculous. It’s time for a change.

    Yesterday, the ADAPT activists met with the president’s health-care “czar,” and this “czar” said that they don’t have time to change institutional bias in their health care reform package this year. In response, ADAPT activists chained themselves to the White House fence, and 91 of them got arrested.

    We have to fight back. It’s time to fight back against administrations that don’t keep their promises, against states that break the promises.

    It’s time to fight back, time to support ADAPT, it’s time for the Community Choice Act – NOW!


    Justice delayed is justice denied. Implement the Olmstead decision, include the CCA in health care reform NOW!

  13. I think not, perceptions are mainly subjective and all of us humans have one. Even the closest of friends may disagree on something and some of our enemies have the same preferences of us. It all matters on what to believe in and the mental strength to keep moving in order to attain our goals. It’s not rocket science how if you let people affect you, it will bring you down.

Leave a Reply

Your email address will not be published. Required fields are marked *