Disability Rights

A Lesson from Greenpeace in My Kind of Activism

*Disclaimer: I do not intend by this post to endorse violent actions or destruction of property, whether by Greenpeace or any other organization.*

I have never chained myself to anything.

I can count the number of protests that I’ve attended in my life on one hand. I simply lack the attention span and the mindset to be a good demonstrator.

I’ve often felt bad about this. I know that without the brave men and women of ADAPT chaining themselves to buses, without demonstrations in DC and in state capitals, and without heroic actions like the historic occupation of the then Department of Health education and welfare building in San Francisco and similar protests in 1977 which led to the issuing of the first 504 Regulations, I would not have basic civil rights today.

I have been privileged, however, to have some opportunity to be a part of positive change. In my undergraduate days, I was privileged to work with my university as they completely revamped their approach to disability. I have been privileged to work with my employers, small and large, to help them to address disability issues. Especially meaningful to me, I have been honored with opportunities to work in disability public policy, first as an intern lobbyist, then as a municipal intern, then as a city political appointee, and most recently as a Presidential appointee.

Nonetheless, I have gone around with the sense of inferiority. I was gratified, therefore, to read a recent article in the Guardian about the newly appointed head of Greenpeace USA.  Says Annie Leonard,

“You don’t have to sleep in the park. You don’t have to chain yourself to something.” The organisation had to be receptive                  to all forms of activism, she said. “There has been a bit of a hierarchy of the people who chain themselves to the fence or go                on the big TV talk shows are somehow of higher stature and are more important than the people who make sandwiches. But                making sandwiches for the protesters is really important too. We have to figure out a way for them to plug in too.”

Her final quote in the article ties these statements to a call to action. In her closing prescription, Leonard says, “Building a movement really does require all kinds of people, so it is our job to make this work accessible and relevant to all kinds of people.”

Now, I will not accuse the disability rights movement of having the same preoccupation that Ms. Leonard attributes to the environmental movement, because I simply don’t have the perspective to judge the movement. I will say that I was guilty of this type of thinking, and used it to judge myself most harshly. I choose to learn from Ms. Leonard, to be receptive to all forms of activism, and realize that I can do the part of the work that is accessible and relevant to me.

For prescriptions, I will say only this. If you are like me, and not particularly suited for protesting, for chaining, or for demonstrating, give yourself a little break. Rather than chastising yourself for the aptitudes that you don’t have, or worse, using them as an excuse to do nothing at all, let us be guided by Ms. Leonard’s wisdom, and find our own role doing something that is “really important too.”

Disability, Disability Rights, Law and Lawyers

Common Ground: Can Disability Provide an Angle to Move beyond Partisanship?

I was fairly politically unformed when I worked as a policy intern for United Cerebral Palsy in Washington, but if you asked me, I’m sure I would have told you I was a Democrat. I’m pretty sure that both of my mentors were Republicans, since one of them had worked in the first Bush White House, and the other had a lobbying resume that one does not associate with the liberal agenda, but I honestly didn’t know, because we were avowedly nonpartisan. Disability, we said, was not a partisan issue.

Certainly, the heroes of the ADA include liberal icons like Coelho and Harkin, but also conservative stalwarts like Dole and Hatch. The law was triumphantly signed by a supportive George HW Bush, and aggressively implemented by Bill Clinton. Many like to think that this is because it is a cause so universally good or right that it transcends ideological bounds.

While certainly human sentiment played a role, I think that this is terribly simplistic. Very few people view themselves, or their positions as wrong, or evil. Rather, in the face of conflicting values, people choose based on the ideologies that are most important to them.

For instance, notwithstanding Mitt Romney’s taste for his own foot, I really doubt that he has anything against the idea of helping people in need. he is simply viscerally opposed to that help being provided in the form of government payments. He thinks that not good for society. I disagree, but this post is not about welfare.

So, then, perhaps the unity around the ADA was really a function of the fact that there was agreement upon both the goal, establishing legal equality as a foundation for economic and social equality for people with disabilities, and the means, enacting a broad antidiscrimination law. With neither side objecting to the other’s goal or means, cooperation was not only possible but desirable.

A recent column by Dana Milbank in the Washington Post noted that Ralph Nader and Grover Norquist had found common ground over the minimum wage. Writes Milbank:

Democrats have made the argument that an increase is morally right and that the only thing standing in the way is corporate greed. That may be so, but it hasn’t won them enough Republican support to get the increase through Congress. But what if Democrats were to make a free-market argument that a higher minimum wage would shrink the federal government and reduce the welfare state?

That’s the argument Ron Unz made to Nader’s gathering.

The government spends over $250 billion a year in social welfare programs aimed at the working poor,” he said, addressing the group via Skype. “If we simply made the working poor much less poor by raising their wages to a much more reasonable level, a lot of that money would be saved, probably in the range of $40 to $50 billion a year.” The $250 billion spent on welfare for the working poor, Unz said, amounts to a “massive subsidy for businesses” that are paying less than a living wage and “forcing taxpayers to make up the difference.”

Call me a cynical centrist, but I could paraphrase this long quote by saying, “Liberals ’ argument that this made them feel good was minimally successful at winning over economic conservatives. Once they were able to demonstrate that the apparent feel-good measure was also likely to be economically successful in raising the target population out of poverty, economic conservatives began to get on board.”

Now, I’m no fan of ideologues on either side, and God knows that there are plenty of folks in Washington today who vote ideology regardless of what makes sense, as was sadly demonstrated in the knee-jerk ideological vote against the ratification of the Convention on Rights of Persons with Disabilities (CRPD) in the United States Senate, despite the fact that it was patterned after the ADA, and supported by Senator Dole and the first President Bush. Further, I am liberal, and fundamentally disagree with the conservative positions on issues ranging from gun control to a woman’s right to choose.

That said, I think policy advocates in general, and disability advocates in specific, could use to do work finding common ground among individuals who disagree based not on ideology, but on a differing conclusion as to what makes good policy. Here, political deal making is not so much holding your nose to appease your opponent as addressing your opponent’s valid concerns. This passed the ADA, and, if we are to believe Dana Milbank, Ralph Nader, and Grover Norquist, could create a coalition around the minimum wage. Surely this will not appeal to true libertarians, and will be insufficient to appease true socialists, but, being workable policy for the laudable goal of raising partners out of poverty might be a blueprint to get something done.

Disability advocates should be looking for these points of commonality. As I point out in my Chutes and Ladders post, sliding scale premium, uncapped non-asset tested Medicaid buy-ins for working personal care users with disabilities is such an area. It promotes employment in independence while ultimately lowering costs of government benefits and raising quality of life for people with disabilities. The baseline for universal support among practical minded politicians is that the end is good in the numbers make sense.

We are always going to have areas of ideology where we disagree. My challenge to any advocate reading this is to begin building coalitions by helping reasonable people focus on the items that just make sense. As we come upon 24 years of the ADA, we have living proof of just what that can accomplish.


My Eser Experience, a Meditation on Community and Its Power to Make a House a Home

This is just a stub to point you to a guest blog post that I wrote for Eser, an in-home informal Jewish learning project run by Hebrew college and sponsored by Combined Jewish Philanthropies. I hosted the downtown Boston group in my home this past Spring, and it showed me how, when strangers become friends, the awkwardness of difference fades away and new places gain treasured memories. Read the full post here.

Disability, Employment

Help Us by Helping Yourselves: The Massive ROI in People with Disabilities

Don’t underestimate the economic power of the disability community.

I understand what Tim Cook of Apple meant in February when, speaking at a shareholder meeting, he said, “When we work on making our devices accessible by the blind, I don’t consider the bloody ROI.”

He was responding to a question about the cost of “green” efforts, posed by shareholders that felt that the company was spending too much on environmental sustainability, and he was trying to distinguish Apple as a company that would be first concerned with doing the right thing and second concerned with stock value.

This post will not debate the question, best left to economists, of the reputational value of being known as a moral company, and the indirect effect of that reputation on stock value. I think that it is there, and should be discussed, just not by me. Rather, I wish to take issue with his example.

As a rule of thumb, we say that one in five Americans has a disability. That’s somewhere in the neighborhood of 60 million people. Excuse me, I meant to say 60 million consumers.

What’s more, not only are we 60 million and growing all the time, for pure practicality we need to seek out for products and services that meet our needs. We may not be the richest demographic, but we still need to buy things, and they need to be the things that will work best for us.

This means, unsurprisingly, that blind people will seek out devices, goods and services that work well for blind people, the mobility impaired will seek out those that work well with their mobility impairments, deaf people will seek out those optimized for deaf people, etc. Further, we tend to crowd source in finding products that work for our particular needs. This means that being first to market in product advances that revolutionize the experience for people with disabilities will grab a wide swathe of us, millions of consumers.

Once you’ve got us, there is a inertia against change. Just like any other consumer, your competitor needs to make a substantial advance in quality or price in order to get us to switch. We know that there are people using apple products today for no better reason than that they had iPhones and iPads when Android devices were primitive, clunky, or just hadn’t been invented yet. Regardless a demographic, the first to market gets a head start.

Obviously, I would love to see every manufacturer of every product designing their products to meet the needs of people with disabilities, but I have no problem with economic rewards going to those who act first. I’m counting on it. In fact, I believe it so strongly that I have started a consultancy practice, Capitalizability, specifically to help businesses reap those rewards.

I’m sure that companies do things because they are right. Companies, after all, are filled with human beings, and we like doing nice things.

I’d rather, however, count on a company doing something because it’s smart business. Once in a while, a company might take the high road. If you show them the profitable road, they will take it almost every time, especially if it happens to be perceived as right. When it comes to serving customers with disabilities, the economic opportunity for the first to market is immense.

So, I respect the values that Mr. Cook was expressing, but I have a message for him: Mr. Cook, when you work on making your devices accessible by the blind, please do consider the bloody ROI. Then, let that incentivize you to do even more.

Disability, Independant Living

Ask and Ye Might Receive: Getting What You Need with a Disability Starts With How You Ask

I have a significant physical disability. I use a large wheelchair, one of my hands lacks almost any practical function and the other hovers around 70%. Not only do I require hired help for all of my activities of daily living in the morning and in the evening, I require enumerable little things all throughout the day. Despite this, I live very independently, not only navigating personal and professional worlds in Cincinnati, New York, and Boston independently, but also regularly traveling independently to Washington DC, with periodic travel to plenty of other someone random locations.

Occasionally, people, especially other people with disabilities, will ask how I arrange the extensive concessions that this lifestyle requires me to ask of others, especially the service professionals that I encounter every day. I honestly think that the answer is in a carefully crafted attitude.

In my experience, nobody with a disability actually believes, “ask and ye shall receive”. We generally assume that the world is going to be difficult. We generally assume that we’re going to have to fight. There is truth to this, and nobody succeeds with a disability without a certain willingness to fight. But, as I say in the headline, I have found that the trick is “ask and ye might receive.”

I did not live to the 1970s, and I was very young in the 80s. I have no recollection of a world in which people with disabilities were truly outside of the consciousness of the rest of the population.

Certainly, I face discrimination every day, big and small. Whether it’s a difficulty in finding an accessible entrance, a store or restaurant with a grandfathered exception that is still closed to me, or that party where the host decided the venue must absolutely be a third floor walk-up, there are things from which I am excluded.

Also, there are people who don’t wish to serve me. The sales clerks in New York who visibly wish that I would go to a different store, the barber in Cambridge who simply announces that my barber is out today and so I should come back, saying without saying that he will not cut my hair, and the x-ray tech in Philadelphia who still can’t quite understand why I have no one with to remove my clothes and put me on the x-ray table.

That said, there are also the 3 different barbershops where the barber begins moving the chair to make room for me as I come through the door before I ever have a chance to ask, and the one on the Upper West Side where the barber runs to the store adjacent to his shop to borrow the ramp so that I can get inside. There are sales clerks and managers in every city who will walk with me through T.J. Maxx in order to help me access things on the shelves, even searching through the shirt bin with me for my obscure shirt size. And, there is the most recent x-ray tech I encountered, in Boston, who not only helped me on the table, but made sure that my clothes were 100% presentable when it was time for me to leave.

I do not pick these examples to indicate that the world has become easy. Neither do I pick them to lionize the individuals that helped me out, though I am grateful for what they did. Rather, I pick them to show that attitudes are changing, and that people with disabilities and our service needs are permeating the general consciousness.

One cannot always depend on getting a helpful the service person, whether one has a disability or not. That said, if you do not have a disability and you are in a restaurant, you expect accommodation from the server when you ask that your burger be cooked medium-well, or that they hold the onions, or put pickles on the side. Similarly, I do not assume that it is a special request when I ask that my food be cut up in the kitchen before being brought the table.

As a person without a disability, upon checking into a hotel, it is not unusual task for extra towels or a wake-up call, or even a rollaway bed. When traveling on business, it’s not even uncommon to ask the concierge to hold the delivery for your arrival. I do the same when it comes to the large number of extra washcloths my hygiene routine in hotels calls for, the fact that my bed will need to be on blocks or legs rather than a platform and, the fact that I will be pre-shipping a lift for delivery. When I make my reservation, I offer these requests with the assumption that they are perfectly normal. I hope that I am as courteous as we should all be to people in service professions, but I don’t imply that they are doing any favors.

This, then, is my answer to the question of how. Yes, some of it is that I have been blessed to encounter truly wonderful individuals. Moreover, through personal choice more than natural demeanor, I am very friendly. I recognize that service professions are difficult and unpleasant, that hotel and restaurant staff or mistreated and abused by superiors and patrons alike all day every day, and so I am nice. I am grateful. I take an interest in their lives, take a moment to smile, and to say a kind word, as I believe that everyone should do, with or without a disability. And, where appropriate to the type of service, I tip, because the failure to pay a living wage in this country is as widespread as it is indefensible.

I do not, however, presume that they are doing me a kindness by meeting my needs. They are doing their job, and I ask with the expectation that they will do that job. Generally they deliver. I neither demand with the implied threat of a lawsuit for discrimination, nor do I wheedle as though they are doing me some great favor beyond the call of duty.

The first, I have found, leads only to a defensive, if not outright combative response. The second, perhaps even worse, often predisposes the listener to feeling that they have encountered in imposition. After all, you prefaced it as such. Once they feel imposed upon, they are looking to find reasons to decline, and you gave them the opening to make that decision by implying that you were asking for a favor above and beyond.

This, then, is my learned and lived experience, which I hope might be useful. If you are person with a disability going through the world, and you have a need, ask for it politely but firmly. Assume that it will be granted. If it is declined, neither beg nor threaten, but, do as the most successful negotiators without disabilities do and asked to speak with the supervisor. But, mostly, ask with the assumption that there will not be a problem. I can’t guarantee success, but it will be better if one adopts the attitude, “Ask and ye might receive.”


Questions Don’t Hurt: Ask Me Anything

“Questions don’t hurt, ignorance does.”

I just heard this powerful one-liner on an episode of “The Facts of Life”, to which one of my Facebook friends posted a link. This episode, from around 1980, claims to be the first sit-com episode featuring a character with Cerebral Palsy. The character is very interesting, a comedian and a relative of one of the series regulators. She delivers somewhat dated one-liners about CP.

A little later on, when Tootie is posing a question, she struggles to find a word to refer to the CP. The actress, who actually has CP, says “you can say handicapped, it’s on all the parking signs”. The episode proceeds to tell a lovely story about jealousy and family, chock full of 1980s goodness. It is on these quotes, however, that I wish to focus.

“Questions don’t hurt, ignorance does.” How true.

It’s 34 years later, and yet there is still so much people don’t know. They see me, with my funny hands or my power wheelchair, and I’m certain that they have questions. I know it because it comes out in actions that reflect a lack of knowledge.

I love the children. I love that they will come and ask me anything. I’m frustrated by the parents who are flabbergasted by their children’s apparent imposition and don’t want me to answer.

I like nothing better than answering their questions. Children have questions about everything. Children have questions about what they see on TV. Children have questions about what they see on the street. Children have questions about their grandfather’s age spots.

Why shouldn’t children have questions about me?

I’m outside of their realm of experience. I am something new about which they can learn. I want them to learn so that they know, so that I become part of their worldview on what is normal, so that I become something within their experience when they have the deal with the other people with disabilities as they grow.

In fact, I wish adults would ask. I wish anyone who wishes to know something about me or my disability would simply ask. Don’t worry about the words, for whatever you call me, I’ve heard it. As the character said, when I was a kid, handicapped was on the parking signs. Further, as I have written before, I’m not terribly concerned about language, just intent.

“Questions don’t hurt, ignorance does.”

Certainly, understand people’s boundaries. Try to pose questions to a friend, rather than a stranger. Try to make sure that your friend is willing to answer. (People with disabilities reading this post, I encourage you to think about how you could make it better for us all by being willing to answer.) Ask with respect, even if you don’t know precisely the right words.

Honestly, if you do not know who else to ask, [email](mailto:matansblogideas@gmail.com) and ask me. I hope that everyone asks questions. I hope that everyone seeks to learn the realities of disability. Because questions don’t hurt, but ignorance, that hurts us all.