Saturday, March 29, 2008

Disability Blog Carnival #34

Disability Blog Carnival #34 is up. The theme is Breaking out. I haven't started reading yet, but I always find lots of good writing and different perspectives from the blog carnivals. Click on over and follow the links to read the different posts. Enjoy!

PS: I just updated my link list--something I have been meaning to do for a while. Check out the right side of this blog under the Excellent Links title for other good reading.

Thursday, March 27, 2008

Anti-Ableism Videos

Part 2: (has a moment of adult implication--worth it, I think!)

Saturday, March 22, 2008

Disability and Stress 9-1-1: Tips for Managing in a Crisis

When things are not working for us or our kids we can be pushed into crisis mode--and these crises can be short-term or long-term. We can be in a terrible panic and at the same time we have to make sound decisions and keep on living. These tips have been helpful for me, I hope they are for you as well.

Talk with friends. It surprises me how often people who are struggling will say, “Oh my friends can’t help me with this.” Some jobs do have specific parameters and specific job descriptions—for example, if you don’t have a fire, don’t call the fire department—but friendship should be much broader than this.

It is true that your friends probably won’t be able to rescue you or your child from their bad teacher, IEP, job or health issue. Many friends could understand that you are struggling though, and some might actually be able to offer perspective even though their own lives are different from yours.

Friends who can’t make the leap to understand your disability issues or struggles should not be discarded out of hand. The friend that can keep you up on your soaps or on what Dr. McDreamy is doing, the friends you exercise with and the friends you went to high school with can—and are often happy to—provide small distractions which can be very refreshing.

By the same token, avoid toxic people. Naysayers and people who cannot value you, your child or your decisions will only make your burdens heavier. If the toxic person is your parent or someone you feel you need to support set boundaries around how much time you spend together and what you tell them about your life. In a crisis avoid them entirely.

A toxic person will NOT become non-toxic because they SHOULD or if you just explain your situation. Protect yourself and your family. If they change they will come to you with understanding, until that happens do not allow them access, they will sap your strength.

Vent, don’t stew. When you are discussing your crisis notice the way you are feeling. If you are feeling lighter you are venting—this is good. It will help clear your head making better decision-making possible. If you are feeling more and more upset you are stewing—this is bad. You will leave the conversation worse off than you were when you went in…be careful!

Seek professional help. Professional counselors, physicians, psychiatrists and psychologists can be very helpful to people who are navigating a short or long crises. Do not deny yourself help when you need it.

Support groups. These get a bad rap sometimes. People think they will find bunches of sad people feeling sorry for themselves and each other. This has not been my experience at all (thankfully!) I have learned most of my advocacy skills and disability-related problem solving skills from other parents and I met many of these parents in my local Down syndrome group and school district parent group. These are certainly not my only supports, but they have helped me in many ways over the years.

Distract yourself. Engaging in something other than the problems at hand for bit can be incredibly helpful. Watch a movie, go for a walk, clean the garage, garden, read a book or magazine (or a blog!), mop your floor.

Be smart about this—this isn’t full-scale avoidance of necessary work. It is just a small “snack”. You might not want to take on the whole garage—just a corner. A little time away freshens perspective, too much will just expand your burdens.

Create order. Terrible situations are only worse if you can’t find your keys. Following routines and keeping things as orderly as possible is MORE important when things are falling apart. The sight of clutter and the struggle digging through things and not finding things adds more panic and adrenaline to a crisis. Don’t beat yourself up about this, just start hanging up your coat in the same place and keeping your keys in the same pocket. When you get the chance to straighten something out, do. These little improvements reap rewards of calmness. (I am the worst at having my house explode in paper and dirty dishes when things go awry—little improvements really pay off, I promise!)

This is also something you can ask certain friends to help you with sometimes. Even if you can’t ask anyone to clean or organize your paper piles, have your friend type and laminate a list of phone numbers for you, or remind you to charge your cell phone and put gas in the car.

Use stress-reduction techniques. Deep breathing, yoga, exercise and more can make people feel calmer and calmer people cope better.

Gather information. Know what you or your child needs, know your diagnosis, understand as much as you can about available options, learn about the laws and policies that govern your situation, investigate other options, etc. Understand your situation so that you are as equal as you can be at the decision-making table.

There can come a time where more information won’t make your choices clearer—when you get to that point STOP! It’s time to employ a different strategy!

Strategize. When approaching a problem think about who may be involved, what their point of view might be and how to address them. Look for allies. Use the information you have, use the advocacy skills and negotiation skills you have learned or bring in someone to help you. Think about your negotiables and non-negotiables. It may be imperative that your child be hospitalized in your home town for example and not matter to you that they will be on an adult floor—or vice verse—for example.

Hold on to your vision. Clarify, strengthen and build your vision for the future for yourself and your child. When a system does not meet your needs this is not your failure, your child’s failure, or your vision’s failure. You may eventually choose an imperfect solution within a system, but this is not because you were wrong—and you are free to choose something that is a better fit at a different time.

Let yourself enjoy the other aspects of your life. This can be terrifically challenging, but it doesn’t have to be huge—sneak a spoonful of the hot fudge from the fridge once in a while, shower with your favorite smelly soap, find things to laugh at wherever you can. Don’t skip birthday parties or nights out if you can help it.

Even if your child demands your presence now they will one day feel guilt if you limit your life too much.

Avoid resentment. Resentment is a very ugly and consuming emotion. It comes from feeling like a victim so make choices where you can and when you think or talk about those choices say, “we chose to do this because…” instead of “we had to…” or “we couldn’t...”

Cultivate other positive experiences. Just because things are going badly at school doesn’t mean they have to go badly everywhere. Enroll your child in a course at the local museum, join a theater group or get a season ticket, take dance, take up cooking or any other thing that will be fun and successful. Look for small things if you need to—really liking tea, or petting your dogs, or taking pictures counts!

I hope these ideas give you some food for thought and some ideas to relieve a little of your stress! Please feel free to share any additional ideas in the comments--you never know who you could help!

Photo from here.

March is Disability Awareness Month: Guest blogger Janice Fitzgerald

This was sent out by Jan Fitzgerald Director of Parent to Parent of NYS. Enjoy!

March is disabilities awareness month. It is a time to raise awareness that people with disabilities want the same things that everyone else wants. Those “things” are friends, peace of mind (including freedom from abuse), to be valued through employment and to have enough money to be able to live a quality life.

It is a month set aside to recognize the great strides in the care and treatment of people with disabilities moving from an understaffed institutional ward to independent and supported living.

During this month of March, be a friend to a person with a disability, consider hiring a person with a disability in your place of employment (there are supports available to train and coach) and recognize that people with disabilities are often the kindest and most compassionate people you will ever know. Including a person with a disability at any meeting changes the dynamics and changes the environment in positive ways. Welcome people with disabilities in to your business, your restaurant and your place of worship.

During this month of March, consider a career that includes working with people with developmental disabilities. There are opportunities in many fields and the gratification at the end of the day knowing you made a difference is tremendous.

During this month of March, there is one huge request. Help end the disrespect and cruelty targeted at people with disabilities by not tolerating the use of the word “retard” in any conversation you are a part of. Do not tolerate the derogatory use of the word “retard” by your children.

Janice Fitzgerald

Executive Director

Parent to Parent of NYS


To read other posts on this blog click here.

Tuesday, March 18, 2008

ZZzzz... Disability Advocates Need New Tools

The attempts of the disability movement to promote a respectful, inclusive, welcoming-toward-disability culture bore our audiences to sleep.

We have developed a group of advocacy tools: we have learned our rights and many ways to protest, we have learned some ways to lobby (I mean ‘educate’), we have learned a bit about congregating and using stories for persuasion, we have learned something about fundraising. These are good and useful strategies, but in truth our toolbox has very few tools and we face a huge variety of problems. As a consequence we frequently apply the wrong tool to the job at hand with poor results.

For example, to host a successful major fundraising campaign and raise a ton of money, first, we show and tell our story of need (‘make them cry.’) Secondly, we present our answer (the way things SHOULD be.) Thirdly, we present an easy action that will make a difference now (give $$, now.)

Donors respond to this in droves. They feel our pain, they see the possibility and they do something. They help you, they feel good and they can quickly disengage from your problems and get back to their lives. It’s a win-win-win situation.

This is a great fundraising campaign or project tool.

We are successful with this tool so we apply it to everything. So if we want to increase employment for people with disabilities we present the need—poverty. Secondly, we present our answer—a job. Thirdly, we say hire us it would be good for us.

And we bomb. Employment doesn’t increase at all. And we don’t know why…

Help Me + Should + Easy Action + Disengage = $$ is the wrong formula for reaching goals of inclusion, respect, and welcome for people with disabilities because it is by design a short-term solution. The ability to disengage after a short action is necessary to get folks with money to contribute to big campaigns that fall outside their usual areas of interest.

Can an employer hire someone today and then disengage? Not really. Employment is not a short-term project and it can’t be effectively addressed with a short-term tool.

Hammers are the wrong tool for glass. Band-aids cannot replace appendectomies.

To create sustained behavior, attitude and culture changes we need to use a different advocacy tool. Perhaps something new—or at least new to us.

I think a skill that has untapped potential as an advocacy tool is advertising.

Consider the manufacturer of your favorite soft-drink (or car, or snack food, or whatever). That company doesn’t want your support for today, for a project or even every October.

Advertisers want you to choose their product day-in, day-out and never disengage. They want you to see their product as a part of you. They want sustained change. They want loyalty. They want you to identify yourself as their kind of people.

This sounds like what we want.

And they are very effective—so effective that advertising is a major hunk of every successful company’s budget.

And it works!

So what can we learn from advertisers that we can incorporate into advocacy?

To start with, let’s look at their messages.

Does the commercial for your favorite soft-drink ever tell you to buy their beverage because they really need the money and their employees really need the work?

If they did would you buy it? You might a few times, to pitch in (you are nice people!) How long would that last? As my teenagers say when I am blathering on and they want to aggravate me to death, “Blah, blah, blah… your needs!”

Ads that work appeal to the needs of the viewers—NOT the presenters.

YOU will be refreshed, YOU will have really cool friends, YOU will have more fun… if you drink our beverage YOUR life will be better.

This single perspective could turn advocacy on its head.

Today we tell our school boards and fellow parents that we want a new computer to help our child meet his potential. And we are seen as the enemy of both the district and the taxpayer.

What if we presented that the $1000 laptop would free up the $26,000/year helper that the district now hires to help more kids? What if we presented that there would be more teacher time for the other kids? Or less money spent on special classes? Or if we came from the premise that communities hire school districts because uneducated adults (with or without disabilities) are expensive?

How would this approach change the dynamics of our advocacy? Who might become our allies?

I have been trying on and off for years to interest various groups of people in teaming up to do an ADA ad. I think working in partnerships would be valuable, we would learn a lot and I think my concept for an ad would be great (I’m a nurse, why wouldn’t my advertising idea be great?? )

I want to begin by showing a bunch of guys in a noisy sports bar who turn to the camera and yell, “We love closed captioning!” And then a person who is deaf would sign, “Me too!”

Then I would show a mom pushing a stroller full of kids into an elevator and she would say that elevators are great and someone with a wheelchair would agree.

Then I would show a shopper with tons of packages and someone with mobility issues opening the electric doors for each other…

OK, this might not be the best idea EVER (it is slightly possible that advertising isn’t my gift. I guess.) But when people object to the idea what they say is that it should show how it helps the person with the disability first and later point out that it is also good for others.

I am reading the book Made to Stick: Why Some Ideas Survive and Others Die by Chip Heath and Dan Heath on the recommendation of Katya Andresen’s blog. They would call presenting something as good for disability first and that it’s good for everyone else later “burying your lead.” This means not placing your “stickiest” message in the priority position.

What are your thoughts? I know advertising is not a traditional advocacy skill, but it clearly works for Coke and Pepsi…could it be tweaked (individualized!) to work for us as well?

Thursday, March 13, 2008

Disability Blog Carival, Ashley X, and Other News

The 33rd Disability Blog Carnival is up posted on Wheelie Catholic's blog. These carnivals have really good writing and perspectives on disability--check it out!

Next, consider contributing to the Blog Swarm March 30th to support ratification of the UN Convention on the Rights of Persons with Disabilities. Find out more here.

Also, Ashley X's parents have been interviewed on CNN. Their feelings about the surgeries they had performed on Ashley when she was 6 to stunt her growth have not changed. My opinions remain the same, further solidified by another year of following stories about the utter disregard in our world for the rights of people with disabilities.

(I have a picture idea, but I will have to take it later!)

FRIDA has some ideas about making sure the perspective of people with disabilities who feel endangered by Ashley X-type decisions are heard. Check out her post here.

Also, check out JFA for an action alert to get IDEA funded. It will take 2 phone calls to your senators' offices (they even have a link to find your senators' contact info.

Wednesday, March 12, 2008

You: Allies and Advocacy

First there are the folks we have to thank. Since my daughter’s birth there have been so many people who have helped us live our life in the parallel universe of disability.

To start with we have a family and a family of friends who, without hesitation, have always been able to both celebrate with us and support us—there has never been a question about acceptance of my daughter or her disability from the folks we love. Not everyone is so lucky.

Our family also been blessed by the professionals in our life: physicians, therapists and teachers from various agencies and schools who have shared expertise and made traveling this road better. Professionals who are not able to see past their own vision of Down syndrome to value my daughter and her individual interests, strengths and needs have been rare for us.

And I already mentioned the xenagogues who light the path for us in so many ways.

There is greatness in our community as well:

Years ago our church hired a sign-language interpreter to be in religious ed with my daughter (without my asking) because that was her first language. And there were wonderful children there—one of whom signed up to be my daughter’s partner when they made their First Communion (she practiced EVERY week after the service with my daughter….)

We have families in our school who tell me regularly that they want my daughter to be in their child’s class—even now, in 7th grade. My daughter is a regular visitor at their home and at the events at their church.

We had a busdriver years ago who advocated to the district to teach my daughter more appropriate bus-behavior rather than kick her to the small bus when she went through a stint of throwing her shoes on the bus. Today her ability to ride the regular bus is considered a life skill.

There are cashiers who wait for her to hand them her money, and restaurant wait-staff that take her order from HER.

We encounter lots of folks who, though we live in a culture that is not often inclined to support people with disabilities, treat us and our daughter graciously and respectfully.

Our life is liberally seasoned with these folks—our gratitude will never be big enough.

I think (hope) that many folks have personal experiences like these to reflect on.

When we draw the circle larger than our own families and want to resolve the issues and barriers that confront and sometimes confound people with disabilities, I think we are rather slow at making alliances. Sometimes we divide ourselves by the particularities of our diagnoses and overlook the areas where we could connect with others. I think this is a huge mistake.

Someone pointed out recently that the ‘disability movement’ is a relatively new thing. While we recognize the variety of needs presented by differing diagnoses, people are uniting for common causes in new ways nowadays. The Disability Policy Seminar presented by The Arc, AAIDD, AUCD, United Cerebral Palsy and NACDD is an example of this. .

Beyond the boundaries of Developmental Disability are organizations that serve people with acquired disabilities related to health conditions or aging that we never meet. I hope the presence of the AARP and AAHSA at the Disability Policy Seminar in Washington last week is a signal that a new age of collaboration is upon us.

I think there are many ways that people with disabilities can work together to improve things. For example, much of what our constituents have learned about navigating the world with a disability could be very helpful for injured veterans and their families.

There is also lots of potential for alliances with people who do not have disabilities. For example, the playgroup (20 moms and their tykes in strollers) that meets at the church on your street would probably work with your neighborhood group and your disability rights group to petition your town for more vigilant sidewalk-shoveling and maintenance… And the relationships built working together will benefit everyone involved.

I think the possibility for creating new alliances to address common problems is largely untapped. I think it could be a new and creative addition to our advocacy tool box that has the advantage of building relationships that can be visited again as well as an effective approach to issues.

What sorts of alliances do you or your organization take part in? What issues or barriers do you now face that are also barriers for others? How could you connect with others around solutions?

And most importantly…does anyone know a good z word?????

Sunday, March 09, 2008

Xenagogue--Disability Leadership That Works

I am just going to admit it, the letter x stinks as a writing prompt! I learned this word from my favorite (nearly) daily read, the blog 37 days by Patti Digh.

Xenagogue is an excellent word though—it means guide. This mode of leadership is one of the biggest strengths of the disability movement.

Throughout my daughter’s life it has been the parents of other children with disabilities and my friends with disabilities that have showed me the ropes—in so many ways.

The day after we got home from the hospital with our new little baby I placed a call to the National Down Syndrome Society. It was a mom that answered that phonecall and gave me the number of my local organization.

I then called our local group and it was a dad whose first word to me was “Congratulations!” (a lesson in itself!) By the end of our conversation he had given me the schedule for upcoming meetings, had asked if my daughter had been seen by cardiology yet, and had asked if I had been in contact with the folks in our county who administered Early Intervention. That call, that dad set us on the path we are still on today.

Parents taught me about Down syndrome, about which programs in town were good and which books I should read next. Parents taught me about the laws and advocacy skills I would need to help my daughter succeed. Parents and friends who have disabilities asked—and continue to ask—the questions that keep me and my family growing and learning.

Parents and self-advocates teach each other to access systems, find supports and develop creative ideas.

Few other folks understand the truly individualized nature of the lives we live. Systems often attempt to ‘bulk’ our kids, trying to assign our kids’ supports based on the system’s capacities or values, rather than on the reality of the individual child’s own circumstances.

Systems often try to implement a “Down syndrome plan” or an “autism plan” for example.

Parents, on the other hand, understand that Down syndrome (and any other diagnosis) has a group of symptoms, and that those symptoms play out differently in each person. While data received from the experiences of others contributes to building each child’s plan, so does the needs, strengths and situation of the actual child.

As a nurse I was prepared by my training for this.

I know many things about appendectomies, for example. I know about incisions, medications, complications, lab results, pulmonary hygiene etc. I must incorporate all of these things in the plan of care for a person who has had an appendectomy. Yet every care plan I make will be different because I must also adjust my plan according to the actual situation of my own patient.

If my patient is very old or very young, has heart disease or diabetes, is pregnant or is HIV positive, has a supportive family or no family at all, or any of a thousand other possible variables, my data-driven plan must be adjusted to be effective. Applying scientific knowledge in an individualized manner is what nurses do.

In the disability world it is usually parents and self-advocates that make this individualizing happen.

Self-advocates and parents “get it.”

We are great at talking to each other.

In a much lesser way parents and people with disabilities reach out to people who do not have disabilities to share the disability experience with them. When we take the role of guide with folks beyond the disability movement understanding grows.

Last weekend in Washington I went out to dinner with a bunch of people, with and without mobility disabilities. As our friends’ guided us from elevator to elevator through the subway system of DC we all learned lessons about accessibility that will be food for thought for a long time.

On a larger scale laws like IDEA and the ADA exist because people with disabilities and parents worked as guides with lawmakers to build recognition of the disability experience.

While the role of the superhero in disability leadership gets overplayed, the role of xenagogue has room to grow!

Thursday, March 06, 2008

Waiting for a Hero--Disability and Leadership

Back a few years ago I attended a rally for IDEA in Washington, DC. It was a big deal—a roadtrip to meet advocates from around the country and visit with our legislators.

While I was there I had a conversation with a group of fellow parents of children with disabilities. In the course of our conversation one woman said, “What the disability movement really needs is a hero.”

I didn’t think too much about it when she said it, but since then I have developed a real opinion.

I was in Washington this week for the Disability Policy Seminar. I spent Sunday and Monday learning tons of information about the laws that affect people with disabilities and I was in a room full of heroes: self-advocates, advocates, professionals, and parents, lobbyists and grass-roots leaders from around the country—all of whom work tirelessly to build success for people with disabilities. And for everyone who was here there are hundreds more back in our home towns also doing this good work.

I think though that my friend wanted a super-hero. Someone to fly in and rescue us (preferably someone with a snappy costume, special effects and a memorable soundtrack!)

And with this I cannot agree.

I have seen the ‘rescuer’ model of advocacy many times and I do not trust it.

It usually goes something like this: A group of concerned people will gather to discuss a pressing need and one person steps up and says (booming voice optional), “I will take care of it!!!!”

They leave the room, work ‘behind the scenes’ on the issue and at the next meeting stand up and say, “Problem solved!!!”

Sounds great, who wouldn’t want that?



Have you seen the movie Superman Returns?

Superman, after many years of being THE ANSWER for the people of Metropolis, left the galaxy for a long sabbatical on Krypton. Without him, Metropolis fell apart.

It seems that people had stopped learning to swim because they knew they would be rescued. The city didn’t focus on crime-reduction because they didn’t have to. Kids didn’t know to tie their balloons to their wrists…. Mobsters ran amuck… Kittens went willy-nilly up trees…

It was a mess!

My friend had the real-life equivalent of this happen in her school district. They felt lucky because they had an administrator who provided extraordinary support for their special ed parent group. In September this administrator retired to South Carolina—she might as well be on Krypton! Without her they've found that their group has no mechanism to get anything done.

They do not have relationships with anyone else in their district, they have no working knowledge of district processes, and there is no replacement hero stepping up to help them.

They are in a tough spot they didn’t foresee. Because they were successful they believed they were empowered. They were not. They were dependent all along.

A rescue may be just what you need sometimes, but it is not leadership

You may want to ask yourself how your own situations measure up. Are you or your organization overly dependent on a superhero? What can you do to empower yourselves? You want to succeed WITH your superhero, not have them succeed for you.

Another popular myth in the Developmental Disability world is that leadership is done by people who have “arrived” at some magical point. Parents promise to attempt leadership when their kids are older, professionals say they will lead when their careers are established (or once they have retired.)

Sounds reasonable.

Who could object to this?

Guess who!


Surprise, surprise!

Leadership = Influence.

People who do not develop a habit of influence will NOT suddenly become leaders at some point down the road.

Part of our problem is that we have a tendency toward all or nothing thinking. Somehow we believe that if we can’t run for president we can’t do anything at all.

The truth is that leadership is a spectrum and there are multitudes of small, medium and large actions that any person can make to influence the people and situations around them.

The picture above is a group of LEND Trainees who attended the Disability Policy Seminar. Together we learned about the policies that affect people with disabilities. On Tuesday many of us went to Capitol Hill to enlist our legislators’ support.

The issues that people with disabilities face in 2008 loom large. The good news is: everyone can make a difference.

To see really good summaries of the disability-related bills that will be before congress this year click HERE.

To read an excellent essay about taking a stand (not specifically about disability issues but absolutely applicable) click HERE.