My youngest child was born in 1993 and within a few minutes of her birth we were informed that she has Down syndrome. Those few words changed my life.
I had left my house on that November morning to have a scheduled C-section, my 4 year old daughter and my 2 year old son were at my mother-in-law’s. It seemed strange and scary to be going to the hospital without being in labor. It was just so different from my other deliveries—little did I know just how different it would be.
Until this point, things had been pretty ordinary—I’d lived a pretty straight-line life. I grew up in a suburban home, went through school, went to college, graduated, fell in love, got married, and had a couple kids. I was a part-time nurse, most of the time mom, active in play-groups and my church, voted in most elections and obeyed most speed limits. I argued the benefits of breast vs. bottle, cloth diapers vs. disposable and paper vs. plastic and worried that I was wasting my life. I didn’t know what I wanted to do when I grew up.
Jenn’s birth gave me focus—cleared away any uncertainty about who I was and what I was supposed to do with my life. When Jenn arrived I knew that preparing her for the world and the world for her was my calling.
Some people thought I was nearly an expert on disability already. After all, I had volunteered teaching religious education to kids with disabilities when I was in college, had shared an apartment after college with one of my high school friends who has Cerebral Palsy, and I had been a nurse for 10 years by that time. The truth was though that I knew the things you know about Down syndrome when you don’t know anything about Down syndrome!
Acutely aware of my ignorance I started reading—a book a day—for months. I have always been a fast reader, but my anxiety threw me into overdrive. I joined the local Down syndrome parent group, and I searched on line. The unfortunate thing was that much of the information I gathered would not be pertinent to my daughter for years, yet I didn’t feel that I had a choice. I had to keep learning so I wouldn’t miss anything.
Finally one day I received a flier for a workshop where a woman named Kathy McCarthy-Proulx from an agency called The Advocacy Center would teach Hands-on-Advocacy. I felt like I’d ‘seen the light!’ It dawned on me that the reason my search for more information could never end was because I didn’t just need information—I needed skills as well. If I acquired some skills then maybe I could relax. Maybe I could be confident that I would be able to access information and support when I needed it. Maybe I could afford to breathe—and maybe I could even read a novel now and then!
I took that class and indeed, my desperation lessened and my learning became more focused. Then I took one about Early Intervention (the education program for children under 5), then another and another. In addition to information and skills I met amazing people. The folks that taught these workshops were mostly parents of children with disabilities themselves. Their knowledge and experience from years in the trenches and their generosity in sharing what they knew was invaluable—I wanted to be just like them.
My fellow attendees were also a great group of people, eager to learn and grow and make things better for their kids. These folks became a network of support and friendship that I still rely on today.
Eventually I moved from gathering information specific to my daughter to wanting to help others. I learned about laws and systems and how to affect them. I became the president of my local Down syndrome group. And I kept attending periodic workshops culminating in 2002 with Partners in Policymaking.
After graduating from Partners I was an energetic advocate. I helped organize a statewide rally about IDEA (the Individuals with Disabilities Education Act), helped form a statewide disability coalition, attended rallies in Washington D.C., testified before my county government, and presented at several workshops among other things. But after a few years of this I became very tired and very discouraged.
I was tired of writing letters, visiting legislators, making all sorts of presentations—telling people (who should know better) that they should care—over and over and over again. I was frustrated that in spite of our best efforts IDEA was finally reauthorized as a weaker law than it had been before, big business was constantly lobbying to weaken the ADA, and people I know continued to face discrimination in education, employment, transportation and more, and much of the world remained disinterested, or even hostile.
I knew advocates who had been fighting these same frustrating battles for decades, and the thought of that was just depressing.
I was working myself to the bone and so was everyone else. What was missing?
It seemed to me that the disability movement was stuck in a loop:
We lack influence.
At first glance it appears that we lack influence because we lack money.
There is more money spent on health and human services than ever before. This money does get people with disabilities through the day, providing daily care.
However, this money does not build anything that lasts beyond today; it does not create a future.
And the reason we lack ‘building money’ is because the country has different priorities—in other words, because we lack influence!
We were caught in the spin cycle and I could see no real way to change this. There will always be a war or a hurricane or some other crisis to consume the headlines and the budget. It made me weary (and dizzy) just to think about it.
We need something more.
I think one of the drastically under-explored advocacy tools available in 2008 like never before is Virtual Advocacy—on-line advocacy.
It can be free.
It’s viral’ as my web 2.0 friends say repeatedly (they mean it spreads like wildfire!)
It crosses areas that are traditionally unconnected—clinicians and parents and policymakers could follow the same blogs for example.
Recently I received notification of a pretty significant disability concern from a friend of mine whose only personal connection to the disability world is me—prior to the internet she would never have happened across this info, ever.
I have e-lists that I feed daily, I blog, I follow other sources of info regularly and pass that along to anyone who might have an intersecting interest (my school district and many of the tax-concerned parents I know were extremely interested in the effect that the proposed Medicaid reg changes could have on our school taxes, for example—and all it took was a couple of introductory paragraphs and pasting in a link.)
For the past several months I have been the Virtual Trainee for the AUCD, attempting to provide a connection between the AUCD trainees around the country and the AUCD itself on-line.
I am sure there are other areas where we, the disability advocates, could have a presence if we thought about it. (My kids rolled their eyes when I propose creating an Ava-Terri, but why not?)
(UPDATE: for an a link of what can happen when someone with a disability puts their issue out on the web click here.)
I would be interested in exploring innovative ways to combine disability advocacy and web applications…. How can we expand our visibility, our credibility, and connections with “our issues” in new ways? What are your thoughts? Where could we go that no one has gone before?
Today is brought to you by the letter U. And what’s this picture all about you ask? Well you should!
GOOD GRAVY! What are people thinking?????
What is it about disability that allows people to abandon their usual values, standards and behaviors?
I am pretty sure that the police officer in Florida who dumped the man who has quadriplegia out of his wheelchair on camera--a camera she knew was there--didn’t make a habit of knocking people over and tossing folks on the floor or she would have had too many felony convictions for assault to be a police officer.
And if the jail personnel in the Kitsap County Jail in Washington had noted really bizarre and self-injurious behaviors from any other of their prisoners it would be treated as a mental health emergency….instead raging symptoms were allowed to continue until the prisoner suffered irreversible damage.
And the other stories of bullying and abuse that is reserved for people with disabilities that generates lukewarm responses from authorities and statements of concern about the perpetrators instead of the victims sets my teeth on edge.
If Barack Obama learned that a minority other than folks with disabilities were being excluded from his campaign events do you think his response would end with an empathetic, but ineffective we’re-doing-the-best-that-we-can? (Read more about this here--this link is to the first of a few posts as this story evolves)
And in spite of the advances in medicine, education and the high rate of success experienced by people with Down syndrome, a portion of the medical community reiterated their position that it is worth the vast financial investment to do first trimester testing for Down syndrome in ALL pregnancies. WHY? The body of scientific evidence about Down syndrome does not support this response, but with disability apparently it doesn’t have to.
And the medical test industry is in full competition mode vying to produce these tests—though they know an entire class of people is likely to DIE as a result of their work. This is acceptable to them—because it only affects people with disabilities.
And what about the professor in North Carolina who made the statement that mothers had the “moral responsibility to abort babies who have Down syndrome” in his classroom. He didn’t say this on the golf course (or in the church parking lot) some Sunday morning, he stated this as the professor in a University biology class—where he is presumably seen as a scientific authority.
Yet again, the science does not support his position. Beyond this, is there another class of people that he would expect to remark on in this way without repercussions? Of course not. (Update: funny post about this here.)
He says he made the statement to get his students to think—and it worked! One of his students realized that his statement had implications for that class and for other students who may have heard this rhetoric from this professor before. She took a stand for the value of people with Down syndrome. She has been criticized for this, but only because it worked. (Of course, other professors at other universities have been making statements like this for years trying to generate just this level of response!)
(Update see the press release from NDSC that came out today.)
And these are just a sampling of the issues that have occurred since the start of THIS year.
Knock it off people! People with disabilities are PEOPLE FIRST. There is nothing about the diagnosis of a disability that changes the requirement for upstanding, respectful behavior.
My alphabet series continues with all the hard letters ahead!! Today is T…
Whether you are involved in personal advocacy—facilitating life for yourself or another person who has a disability—or whether you are advocating for improvement in entire systems and cultures that affect people with disabilities, the most difficult thing to manage is our own energy. Many times burn-out and exhaustion (or the fear of burn-out and exhaustion) keep us from getting involved.
There are, however, people who stay active for years and years without being consumed—so how do they do it???
I believe that often these feelings of burn-out stem from a feeling of helplessness. I will begin with a list of 10 antidotes—I would love you to put your own additions in the comments section where anyone who reads this can benefit from them.
Self care. Taking the best care you can of yourself is the FIRST and most important advocacy skill anyone can learn—and sometimes one of the most difficult.The realities of our lives often affect our most basic functions. If for example, our child does not sleep, we might not sleep either. While we may need to live with very different sleep patterns, we should not ever make the mental leap that says our sleep doesn’t matter. Even if we haven’t come up with a viable solution yet, our mindset needs to affirm that we and our needs DO matter.
It is counter-intuitive, but an attitude of self-respect makes us respect-able to the folks we are approaching. Advocacy is more successful among equals. If we give the impression that we are suffering martyrs folks will need to “rescue” us—and we won’t have input, instead we will need to be grateful for whatever they can come up with. If people see us as inspirational heroes there is nothing they can come up with that will meet our standards, so they are off the hook to try to. We again, will just have to deal with whatever they offer because they ‘could never reach our level.’
If we are equals at the table (any table—at school, at work, or at the statehouse) we can better work to craft something that will meet our needs.
Caring for yourself happens behind the scenes, but the attitude of self-respect that it instills in you is a very effective advocacy tool. Try it, you’ll like it!
Inspire yourself. Surround yourself with uplifting things as much as you can. Artwork (gallery-ready, or posters, or something made by your kids—your choice!), music, movies, newsletters, e-subscriptions, or whatever will improve your ability to address your needs with others.
If your faith tradition has a daily discipline that inspires you, try to fit it in (modify it for your needs—it’s a reasonable accommodation!). If you have friends that always make you feel better, get in touch with them and if you have friends that bring you down avoid them!!!! If a certain color, or wearing jewelry or not wearing jewelry inspires you, go for it!
What inspires you? What does your ‘soundtrack’ sound like? What scene have you set? Share your ideas, I want to know!
Develop skills. There are classes, on-line resources, books, and more experienced mentors in nearly every area of advocacy. Knowing how to write a powerful letter, give testimony, use a microphone, negotiate, look up a law, understand a law, meet with a legislator, etc is very empowering.
A person who has these skills is not intimidated—does not feel helpless—because they can address anything. Knowing that you are able to face the situations that may arise in your life is a great way to prevent that overwhelmed feeling that makes you want to crawl under your bed. Having the tools you need on hand, aka being prepared, works—whether you’re trekking through the wilderness, climbing mountains, or living with a disability.
Over to the right hand side of this blog are listed many great books and websites that teach skills—check them out!
What else would anyone recommend?
Be informed. Once you have the skills you need, knowing what is going on is the next step of empowerment. You need to know your rights, you need to know when things are changing, and how and why. Staying aware prevents overwhelming surprises and allows you to plan advocacy efforts that can make a difference.
Have a sense of history. When you are arguing with your school district or trying to change a law it is easy to get frustrated and think that your efforts make no difference. Remembering that 35 years ago that people with disabilities did not have the RIGHT to an education, that no one had ever considered accessibility, that the life expectancy of people with Down syndrome was 9 years old helps. It helps us to remember that the efforts of other have moved things forward, and ours will too. Little by little.
Respond. Often our feeling of helplessness come from feeling we should ‘do something’ and then not doing it. Do not buy into all-or-nothing thinking and decide that since you can’t run for president you can’t do anything at all. Pick an action and do it—you’ll feel better.
Right-size your response. There are two aspects to this idea. First, be strategic and choose to do something that has the highest chance of making a difference. Secondly, choose something that will satisfy you.
Years ago my brother worked several small part-time jobs. He was in college and needed money without ongoing responsibilities—it was perfect at the time. When he was done with school he kept those jobs for a while and eventually the lack of connection and cohesiveness began to depress him. At that time he needed one job with ongoing responsibilities that would BUILD something for him.
Sometimes you need to just pass along e-mails, sometimes you need a project, sometimes you need to make a career of an issue. Listen to yourself, and invest what you need to invest to be satisfied.
Supersize EVERYTHING! I don’t mean when you are out to eat. I mean get as much bang for every effort you make as you can. If you write two minutes of testimony and speak at your county’s budget hearing make copies of it for each of the legislators to have, tweak it and turn it into a letter to the editor, tweak it again and turn it into a newsletter article, e-mail it to as many people as you can think of, etc.
Make your efforts count by putting each thing you do to work in as many ways as you can think of!
Friends, supporters, and mentors. Have them, be them. Enough said!
Creativity and passion. The successful long-term advocates I know are creative. They look for new skills, new approaches and new ideas in advocacy. They do not keep doing the same things over and over and over.
They also have other passions and interests in their lives. (Gary DeCarolis calls them ‘sanctuaries.’) They are active in their churches, travel, make stained glass, garden, collect antiques, read voraciously, cook like fiends or SOMETHING!
Yesterday being Valentines Day and being up to the letter R it seems like a romantic post would be in order, fortunately for all of us Dave Hingsburger and Jennifer Graf Groneberg have posted those. I have to talk about respect!
A few years back my oldest daughter came home from school and told me that there would be a new kid in their class starting tomorrow. She said that she knew that he had trouble with listening and with his behavior and needed extra help to learn.
I stared at her open-mouthed for a while.
“What’s his name?” I asked.
“What’s he good at?” I asked.
She didn’t know.
Someone, probably in hopes of creating understanding for this kid, had introduced him to his classmates worst foot forward.
This didn’t gain him a lot of friends. Go figure.
What would have?
A little respect!
Disrespect toward people with disabilities is rampant. People with disabilities are abused, injured, shunned and disregarded in big and small ways with sickening regularity.
It is a complex situation with many contributing factors: • All people fare better in situations where everyone feels a balance of security and accountability for their behavior. • All people fare better when common ground is recognized (we like the same band) or built (we were in the same class.) • People fare better when there is a strong, positive example of good treatment for all. • People fare better when everyone is expected to contribute, facilitated to contribute and recognized for contributing. • Any other ideas?
Have you seen the proposed Medicaid cuts? Do you notice that these cuts only affect the sickest and neediest people in the country and their caregivers?
Do you notice that the things being cut are necessary items—in other words, when Medicaid stops paying for these things someone else will have to? Do you realize that this sort of shell game—shuffling who pays for a something essential—makes agencies look good, but actually saves taxpayers nothing? (What difference does it make to the taxpayer if their federal taxes go down $5 and their state taxes go up $5???)
And do you notice that these cuts position people with disabilities as the enemy of the budget? These are not proposals to cut waste, manage budgets and eliminate fraud, these are proposals to cut care. The agency has nothing to lose. If we can’t gather the support to overturn the changes the only people who will suffer are a nearly invisible minority, and if we can muster the support any higher costs can be blamed on us… Lovely.
If these cuts go through care issues for people with disabilities will be elevated from a national struggle to a national crisis. Private insurers certainly will not pick up the difference. This could well create the demand for Universal Healthcare…do you think that’s the intent?
Are we going to be overwhelmed or build an opportunity?
It is not a bad one, honest! The first page is an introduction, on page 2 is a really easy to read chart about all 6 of the proposed cuts. That is followed by a discussion of each of the cuts that tells what we had before, what the cut is and what the impact of the cut will be. After that is the appendix with supporting data.
Just pick the issue or two from the chart that matter to you and read the narrative on those if you want.
Next choose your level of involvement:
If you just want to dip your toe into this issue pick the one or two cuts that upset you the most and call your legislator’s office and tell them your thoughts. (The person who answers the phone may speak to you, or they may have you speak to a staff person who knows about the issue—either is fine. They will ask for your name and address to confirm that you are in their district.) The whole thing will take 15 minutes at the most.
If you want to wade a little deeper make the call as above and write your concerns into a letter. Make your letter personal—show why these cuts will harm you or your child and include a picture of yourself or your child in it (imbedded/printed right on the letter is best.) E-mail it to your legislators and the president. Then, brainstorm who else you can send it to: Would your friends want to support this? Your co-workers? Your school district? Your doctor’s office?
If you feel this is something you really need to dive into, do all of the above and call your legislators’ offices and make an appointment to go visit. You can go to your local office, you can bring your friends—keep your appointment and stay on target (politicians like people and will want to talk about how you like the new park in your neighborhood or how the bridge named after them is working out!) Bring your letter and leave it with them.
A trip to your legislators offices in Washington can be very effective as well. March 2, 3 and 4th is the Disability Policy Seminar in Washington. This conference will give attendees a course on all of the disability-related issues before congress at this time and on the last day you will make appointments and go talk to your legislators about the issues. It is a whirlwind event—extremely worthwhile.
Partners in Policymaking, an advocacy training program for adults with developmental disabilities and family members of people with developmental disabilities was started in 1987 by Colleen Wieck and the folks she worked with in Minnesota. This extraordinary group of people felt that if parents and self advocates had the appropriate skills and information, they could improve the lives of people with disabilities in their communities, in their states and the nation.
I applied to be in Partners in 2002 and was accepted so one weekend a month for 8 months I made the 4 hour trek to the state capitol (Albany) to take my course. There were lessons on public speaking (“the microphone is your friend!”), person-first language, building life-visions, inclusive education, housing, community-building, the legislative process, rights, advocacy skills and more. We learned to speak publicly, to present testimony and to be attentive to each others strengths as well as accommodate each others' needs.
Partners in Policymaking is a leadership program and the presenters on each topic are top-of-the-line. My class heard Deborah Whitfield on person-first language and disability history, Al Condeluci on community inclusion, Lou Brown on transition and employment, Tom Harmon from the NYS Commission on Quality Care spoke about Willowbrook and taught us how to give public testimony, Pat Johnson from NYS CQC as well spoke about New York’s legislature, Jean Tellier spoke about housing issues, Curt Decker from NDRN taught us how a bill becomes a law and about working with legislators. And the list goes on: Rob Davies then at OMRDD spoke about housing issues and rights, Carol Blessing spoke about transitioning to adulthood and Sue Cullen presented on self-determination.
Cutting-edge ideas and principles are taught every year. Some classes have the opportunity to hear different speakers.
Being away once a month wasn't terrible either! It was always hard to disengage from my home life, but they were fine and so was I!
And as good as the presentations were, the relationship that was built between my classmates was by far the best part! I shared my Partners class with and extraordinary group of people. We were a diverse group—many races and religions were represented, there were people who came from the largest city in the country and from towns so small you can’t mapquest them, and we had a vast variety of ability levels.
At the first session, like most people, we circulated the room looking for people just like us to hang with, but as the sessions went on common ground was built and all of us expanded our definition of “just like us” to include everyone else. That diverse group of folks became a support system—-I can’t tell you how many times an issue would come up at home that I would tag to discuss when I got to Albany (and I can’t tell you how much I missed that when it was over!)
We learned to talk so that all of us could understand and we supported each other so we all shone—I helped one of my Partners remember to take his meds and he kept me on time schedules (He still does today. Thank you Jason!)
And those relationships continue today—with our own class and with the other graduates from across the state. In NY we have a graduate website and list-serv and when I am taking up a new project the phone line from here practically burns up with calls to the Partners I know who have experience with my situation in their town. We frequently unite on common issues as well. Among other things we have rallied for IDEA, in support of a family who lost their son who had autism to abuse, and we took part in a phone/fax campaign on burden of proof last year.
Let’s see, have I said it all? Great speakers, awesome content, leadership skill practice, full-immersion diversity training, ongoing friendships and a dynamic statewide network…
And do I have to say that all of this experience is an asset in your whole life?
The only thing left to say is: Find the program in your state, apply, attend, and learn to conquer the world!
(NY’s applications are available now, due March 14. Classes start in May and I’ll be presenting!)
I invite other Partners grads to share additional information and thoughts--just click on the comments button below!
My daughter is a VERY helpful child and rather fond of routines. So when she got home from school a while back she emptied the dishwasher for me.
All the dishes were put away in the cupboards….silverware in the drawer…all drawers and doors shut…’cause that’s how she rolls.
Yeah great, except I had run out of soap, the dishwasher had not been run. All around my kitchen dirty dishes were now mixed with the clean dishes in every cupboard. I hadn’t started supper yet and we had a full evening ahead. I might have cried but my daughter told me not to be a “drama mama.”
We ordered pizza and I began the task of cleaning every dish I own and wiping down the cupboards. Because I had nothing better to do.
Later I sat down with my computer for some well-earned blog noodling. I have a ton of favorite blogs—some about disability issues like this and this, non-profit issues and social change like this and this, some about scrapbooking like this and this and home and decorating blogs like this . The creativity out in the blogosphere is amazing.
Just a few weeks ago one of my friends and I were laughing about the women who post pictures of their tidy organized cupboards—something we agreed we would never be able to do.
Mid-surfing that night it dawned on me, because of my daughter, I had (for one brief and shining moment) designer blog-worthy cupboards!
Now I know disability struggles are often (usually) more daunting than a bunch of dirty dishes. But there’s also (usually) another way to look at things.
My friend Jackie the LEND Family Faculty Member at the Strong Center for Developmental Disabilities at the University of Rochester has this quote from fellow family faculty member, Darla Cohen, on her office wall: “Whether or not you planned to be the parent of a child with a disability, what are you going to do with this opportunity?”
Thinking about disability from this perspective is helpful in two ways.
Looking at our past struggles and cataloging the challenges we have met makes us realize how much we have achieved—even when we have felt like we were treading water. Try this exercise:
Divide a paper into 3 columns. Title the first column ‘challenge.’ Title the second column ‘what did I get to learn or do.’ Title the third column ‘what I do now—or could if I felt like it.’
When I did this I realized that I had learned and practiced advocacy skills, learned a lot about education and medicine, had had board appointments, had been the newsletter editor and president of a small non-profit support group, and more. And making a list of all the ways those skills help me (or could if I wanted them too!) was very reinforcing.
This works if you are a parent or have a disability yourself. One of my friends has had really huge challenges around transportation. To address these challenges he also learned lots of advocacy skills, he’s learned time management, to use a cell phone, creative problem-solving, and his way around our city. The transportation issues were a pain and nothing takes that away, but nothing takes away his new skills either.
Facing new difficulties from the perspective of recognizing opportunities is helpful too. It is easy to feel overwhelmed and paralyzed by the level of needs we face—at home, in our communities, in the country, and the world. Feelings of helplessness flood our engines.
Recognition (or creation) of opportunities under duress helps us stand back from our problems rather than under them. It allows our creative problem-solving engine to start.
For example, perhaps the horrors committed around the world toward people with disabilities in recent weeks may be an opportunity…to blog…to write a newsletter article…to start an organization…to pressure the US to sign the UN Disability Rights initiative…
Overwhelming or energizing? The choice is mine.
This is what I have learned from having a child with a disability—well this and not to run out of dishwasher soap!
(Image from here—my own cupboards are back to normal!)
(Thia is the press release from NDSC and NDSS) The National Down Syndrome Congress (NDSC) and the National Down Syndrome Society (NDSS) condemned the use of individuals with Down syndrome by terrorists following dual bombings in Baghdad Friday. According to news reports, terrorists used remote-controlled explosives attached to two women with Down syndrome to kill at least 73 people.
Responding to news of the attack, NDSC Executive Director David Tolleson said, “this tragedy is compounded by the terrorist’s vicious exploitation of individuals with Down syndrome.” NDSS President Jon Colman agreed, noting that “this was not a suicide attack, these women were murdered, as surely as the other victims.”
This is not the first time individuals with Down syndrome have been used by terrorists in such deadly attacks in Iraq. On January 31, 2005, an explosive device tied to a boy with Down syndrome was exploded in Baghdad, in an act condemned at the time by NDSC and NDSS and others around the world.
Both the National Down Syndrome Society and the National Down Syndrome Congress urge the Iraqi government to use every available method to end the abuse of individuals with Down syndrome and to use this tragedy as a catalyst to enact and uphold policies and laws that will protect the basic human and civil rights of all individuals with disabilities.
When you enter the parallel universe of disability whether through accident, illness, or birth—yours or someone else’s—what is most shocking is the level of nastiness you can encounter. It’s mind-boggling really.
I do not intend to be depressing here—you can also encounter a lot that is heartwarming and even miraculous and these are awesome gifts. Talking about the heartwarming is inspiring and really pulls the heartstrings of people who have not experienced disability in a personal, intimate way.
Inspiration is awesome. The folks in the trenches also benefit from recognition of the other situations in our lives and hands-on help to get through them.
Disability means that a part of your body works differently—these differences impact people’s lives in varying ways depending on where, when, and with whom they find themselves and what structures exist in that space.
For example, an allergy is a disability that means your immune system works differently. On a midwinter day out on the frozen tundra, this may not be much of a problem, a surprise encounter with a rose garden on warm spring day—depending on how your allergy affects you—could be an entirely different matter.
Do you have antihistamines with you—or have a friend along who does? Will that antihistamine make you drowsy? Will you be able to get a ride home if it does? Are you with your adult friends or your 4 year old daughter? Is there a nice place with filtered and conditioned air handy? Or a phone?
All of these determine the extent of how disabling your disability experience will be—and it is subject to change.
This is true for all disabilities: I have a friend who has Cerebral Palsy. At her house she can unlock the door, cook, clean, use the computer, the bathroom, the light switches and everything else pretty much on her own.
At my house she can’t do any of those things alone.
This has nothing to do with the 15 minute ride from her house to mine (snarky comments about my driving will NOT be published!) It is because my environment does not accommodate her needs.
This is not nastiness, this is the nature of disability.
Nastiness comes from external sources that purposely or inadvertently sabotage the environments or supports a person needs to have access to their life—thereby making a difference disabling.
There’s my friend’s son who at the end of school last year had developed a group of good student behaviors which he was using in the regular classroom with success. This year the supports he needs to succeed were taken away from him and his classroom teachers told everyone that this is because he cannot learn in a regular class. His student behaviors deteriorated and his family disputed this. He has recently been evaluated and they have discovered that he is able to do much of his academic work at grade level—implying that he was learning in that classroom despite the inappropriate supports the teachers provided. (A similar shift happened to my daughter several years ago.)
Sometimes the reasons for this are the personal paradigms of the people involved.
In the allergy example if you are out with your friend who would never leave the house without a pharmacy, a phone and a full first-aid kit in her purse (because you never know…) your experience will be different than if your are with your friend who does not drive, use cell phones or put chemicals into her body that are not organically and locally grown. And if the people who find you gasping in the rose garden decide that it’s because you’re drunk or deserve it somehow they may well leave you there. Other people’s paradigms can create your reality.
Sometimes there are entire systems that undermine success. The district that wants to get funding for a special class may be vested in filling that class up—regardless of your child’s actual needs, for example. The institution that brings funding to a region may resist efforts to develop smaller community-based housing options despite evidence that those options are more cost-effective and provide better quality of life for their residents.
Other examples are insurance companies that deny things like wheelchairs and hearing aides saying things like “this is not medically necessary inside of your house.” (As if isolating a person in their house is a medically sound decision.)
Insurance is a racket—one mom I know of pays nearly $600 per month for the privilege of being routinely denied things like wheelchairs and standing tables and medications for her son. The only thing she pays more for is her mortgage—and when she wants to she can sell her house and keep the profits… If you are looking for a cause that needs fighting, insurance issues would keep you busy!!! But I digress…
There are examples of nastiness—some of it quite personal, some of it systemic—on many fronts. There are disability rights conflicts about healthcare, voting, employment, education, housing, and more ongoing—today. Check out the current issue of the Disability Blog Carnival to read about people’s experiences with professionals and their tips for success.
Pain. The result of nastiness is pain. It is exhausting, discouraging (that is dis-couraging) and sometimes overwhelming.
To handle the pain we can be thrown into a few modes—some more productive than others!
Avoidance. We accept anything—we take only paths without resistance. We smile and thank everyone for anything or nothing. We tell ourselves that the sow’s ear we receive is just as good as a silk purse (when what we really need is the blue vinyl one that is just the right size and matches our shoes!) We take no stands, we have no conflicts, we make no gains, we put up with whatever we must to feel better, we have whatever quality of life THEY allow us to have, AND an ulcer.
Aggressive Assault. We accept nothing. We fight everything all the time with every weapon we can think of—no holds barred. We are never satisfied because things could always be better. We turn down the sow’s ear, say that the blue vinyl should be silk and the silk purse should be diamond-studded—and if it is then it’s too heavy. We have tons of conflicts, we appreciate none of the gains we might make, we have a miserable quality of life no matter what AND an ulcer.
Advocacy. We speak up. We ask for what we need, we have many strategies—we persuade and negotiate, but if it turns we’re facing a nail we find a hammer. We respect ourselves and others and are proud of the things we achieve. We hold out for the blue vinyl purse if that is what we need—and are happy with it (it really does look great with those shoes!) We know we are never done, but we also know that advocacy is for problem-solving and best friends, hobbies and therapy are to make us feel better. We have a shot at a nice quality of life, and most of the time, avoid the ulcers….
Advocacy can turn nastiness into those heartwarming stories we all love to hear.
I am the mother of three, wife of one. I am a Partners in Policymaking graduate and a committed disability advocate. I want to catch up on my scrapbooking, learn more about art-journaling, get my house in order, read all the books I have set aside to read and change the world--not necessarily in that order. The opinions in this blog are my own and not those of any of employers.