Can't wait to hear your vacation stories this month on The Road. Also, please share our Fundrazr page so we can raise enough money to get to Indianapolis next month and continue to spread the word and connect with other families.
Summer is starting and so are the vacations. Do you have a favorite place to go with your loved ones? Are there places that are better suited for adults who have Down syndrome that you can recommend to other families? We'd love to hear your stories and share your favorite vacation photos!
Josh and I are vacationing at my mother's. She lives near the beach - but Josh LOVES the pool (not so much with the sand) ! I love seeing him get some much needed exercise as he swims back and forth making laps in the cool water. He's always been a water baby and learned to swim at a young age.
Can't wait to hear your vacation stories this month on The Road. Also, please share our Fundrazr page so we can raise enough money to get to Indianapolis next month and continue to spread the word and connect with other families.
As adults, we all end up settling in one way or another. How many of us, with or without a disability, end up working at a job we absolutely love? Most of us settle for something that will pay the bills. Hopefully, we're able to find something that lets us use our skills so we're not bored to death, but most people LOVE the weekends. Rarely are we able to convert our passion into a career.
As the debate over sheltered workshops and "meaningful employment" continues, I've struggled with exactly what that means. In my teens I worked at a few fast food places. I ended up moving to a better job at a drug store. From there I ended up paying medical claims for an insurance company. None of those were exciting. They were available. I did my best and moved up in the last company, changing positions when I discovered something that I was good at.
I've always envied people who have the resources to create their own employment, follow their dreams, and earn a living doing what they were meant to do. Most of us aren't that lucky. What we can do however, is pay attention to what motivates us. We can take an honest inventory of our talents and skills. Hopefully, we'll think of a dream job, and maybe get a chance to work towards it. That's what dreams are for - setting realistic goals. Who likes to keep working towards the same dream all of their lives without getting anywhere?
As parents, I think too often we end up settling for our kids too. Sometimes it's a matter of financial resources. Parents may look for employment for their son or daughter that allows them to pursue their own careers. They can't afford to stay home, so the child has to go somewhere. Sometimes we end up falling for the hype we've been fed since our child was born - they are limited - they won't be happy in challenging positions so we should give them something easy to do so they can be "productive." Sometimes, we just don't know where to turn or what to do. Services and supports are out there, to varying degrees, but they can be difficult if not impossible to navigate unless you have someone who can show you the ropes.
In the past several months I've gathered stories about people who have Down syndrome that have fabulous jobs. Their parents were able to find a talent or skill and turn it into an opportunity. Full disclosure: I'm a little jealous. I know not everyone operates on the same level. Not all people, with or without Down syndrome, could to the jobs that these people have. The thing that inspires me is that the parents were able to find solutions. I've been thinking a great deal about how we can support each other to make this the norm, rather than the exception to the rule. I've been thinking about WHY we settle - for ourselves and our children.
Here are a few of the people who have turned their passions into "meaningful jobs."
We are the best of friends. We enjoy making cards and want to sell the beautiful cards we create. With the support of our parents Just For You CardArt was launched.
Christian Royal is a young man with Down syndrome who struggles with single words and has yet to grasp basic addition or time. However, since his teen years, Christian has shown an interest in, and aptitude for, working with clay. Christian was unable to “do” school as other students did and began making pottery as part of his homeschooling program.
"Sarah and I started cooking together because she was going through a tough time in middle school," she told me. "She hated school. Hated having Down syndrome. Hated being different. She shut down and hid in the basement and cut herself off from everyone. So in seventh grade, I removed her from all special ed courses and only put her in inclusion classes and homeschooled her half days. I used cooking to help teach her. She really liked it. One day I thought, Why not let others see the benefits of cooking and how you can incorporate therapy, communication and friendship?
Oliver now (2012/2013) attends a mainstream college in Taunton Somerset England and hopes to be able to further his photography to a point where it can be his form of income.
He wants to be 'a professional'
Creative Thinking and Not Settling
When I spoke to Helen Royal, she told me that neither her nor her husband knew anything about pottery. The tried it as a way to bring art into his homeschooling curriculum. His parents had taken him out of school because teachers wanted to put him on a "trainable" path... Sarah's mom used cooking as a way to connect with her daughter who was having trouble in school. Tim worked in public restaurants and found he enjoyed greeting people. His parents were able to by a store for him and now his hugs are famous! Donna and Jenna are best friends who turned a hobby into a business. Oliver and his step-father started taking pictures together and discovered a hidden talent that could end up being very profitable. All of these are examples of using passion and talent in a entrepreneurial venture. They are extraordinary stories, not because the adults in them have Down syndrome, but because they and their families didn't settle.
I would like to have a brainstorming session on how we can help each other discover the hidden talent and passion in each of us and our children. We all have something to contribute.... Anyone interested?
When was the unexpected better than what you expected?
This question comes from Mardra in her latest blog hop.
She suggests that we go with our first thought - that's easy - Josh.
I've often mentioned to family and friends how lucky I am to have Josh as a son.
There's no drug issues
No fear of becoming a grandparent too soon
No late night parties, speeding tickets, or car accidents
There are frequent and sincere "I love you"s
Genuine gratitude freely expressed
Hugs in public
Thinking about this has made me realize how much we limit ourselves, and others, with expectations. If we hold strong to what we expect and try to change people to met our ideals, we risk two things: 1) a HUGE headache from slamming our heads against an immovable wall, and 2) missing out on the uniqueness of people and real, honest relationships. I'm so grateful to Josh for teaching me this and many other valuable life lessons. (Didn't expect THAT either!)
Would you like to join the hop?!
Some of you may have noticed that we've been fundraising lately and wondered why. Since we're a very new group, I thought I should take a moment and explain exactly what's going on to those of you who have been with us so far, and any new people that might see our pleas for help.
What we're doing
We've also been involved in spreading the word about #JusticeForEthan and raising awareness via World Down Syndrome Day and the A to Z Blogging Challenge. Most of all, we've been building connections with other parents. One of our main missions on "The Road" is sharing our personal stories in an environment that is accepting and understanding of individual choice. We all have different perspectives and by voicing our opinions we can learn from each other.
Why is "The Road" important?
There are already several national support groups for Down syndrome out there - so why do we think we need to add to the list? We here on The Road feel that our specific needs are sometimes overlooked by the bigger groups. We understand that "the Nationals" have their hands full with what they each do well and that work is important. We also believe that as caregivers, our experience and knowledge matters. Stories are important tools. They allow us not only to share our experience with each other and to pass that experience on to parents with younger children who have just started their journey - but they also provide a way to record our history. We've got a unique place in the narrative - the first generation to be "included" in schools and now facing the new challenges of living longer and expecting to be "included" as adults in the community.
The members of the team are all volunteers. We're "Moms on a Mission," dedicated to a cause we believe in. We're just starting to get organized and get the word out. This all started as a direct result of #JusticeForEthan and the grassroots advocacy that grew out of tragedy. Connections were created, support was organic, the voices multiplied, and friendships were formed. However, we also realized that there was no structure behind our efforts. We were each doing what we could in our own sphere of influence. Together, we can do so much more, but how do we reach each other? Many parents of older individuals are not familiar with social media. They may use it occasionally, or be completely "unplugged." So how do we connect with those people and add their voices to the story? One answer may be to spread the word at the already established national conventions.
My personal plea
I'm not one who is comfortable asking for help. I'm not a salesperson. I do, however, have a strong calling to make this group a success and help as many people as possible. We're not wealthy. We, like many families caring for adults with developmental or intellectual disabilities, rely on government programs to make ends meet since I left work to stay at home with Josh. There are two sides to this reality as I see it. 1) It gives me the insight necessary to understand the situation first hand of those on the margins - those whose lives depend on society caring enough to support finding better programs and solutions. 2) It makes it hard to promote and grow any type of venture that requires money. I can write, talk, and share till the cows come home, but finding money for travel expenses and infrastructure is difficult.
Our Latest Effort
If you believe in our cause, and would like to support our efforts, please consider donating to our FundRazr account.
Open for Suggestions
If you have an idea for fundraising that you'd like to share - we're all ears! Send us a message and we'll talk. In the meantime, please share our FundRazr page and join the construction team! :D
You are an important person, the result of a complex mixture of characteristics that combine to form your personality. You have both positive and negative qualities – strengths and weaknesses – as well as personal likes and dislikes. This makes you totally unique and different from everyone else. You belong to the human family and yet you are an individual. You defy simple descriptions and labels because you are more than just a “type of person”. Each of us is convinced of our own worth. We each believe that the world would be changed forever if we were not present, and that is certainly true. We all play our respective roles in life, and without us things could not possibly be the same. These are the perceptions we embrace concerning our own lives.
This is the opening paragraph to blog post by Michael Crawley - Saturday, March 22, 2014. The article goes on to talk about perceptions of people with developmental disabilities:
Do we believe they are different?
It's a really great article and I'd recommend everyone read the whole thing. I found it on a day when a young person I care deeply about made a comment that led me to believe that she had doubts about her own worth, and the words really hit home. How much do we allow other people to define us? How do social constructs like IQ scores, grades, and even "loaded words" like "sheltered workshops" influence our thinking without our even knowing it?
As I glanced at the site to see where these inspiring words came from I found something totally unexpected - the site is operated by the owners of a sheltered workshop! Seventy percent of the workforce at The Meadows has a developmental disability and one of their business services is data destruction. So, the wheels started spinning in my head.
Why was I shocked to see that a piece about perceptions and breaking down stereotypes was written by someone who works for a sheltered workshop?
Recent comments I've seen about sheltered workshops reflect the many perceptions that float around in our society:
"Sheltered workshops are nothing but giant understaffed day cares"
What's interesting is the MANY people who have come forward to disagree with those perceptions!
There was even a Change.org petition to STOP the movement in Missouri!
Check out some of the comments on recent articles by big disability groups like Disability Scoop, and in states like Oklahoma where a poll was published in on online newspaper:
We've even started our own survey here on The Road and the results so far are mixed.
The fact is - perceptions seep into our subconscious and surface in unexpected ways. If someone asked me point blank what I thought, I could tell them. It's only when something like this happens, that I'm able to see that even those of us who call ourselves "informed," "unbiased," and "accepting," can sometimes fall prey to powerful social pressures.
I'll work harder to make sure this particular issue gets resolved in my own head but how can we help others see that this is happening? Maybe more comments, petitions, and voices of the people who are currently benefiting for such places will help.
The Meadows also has a Testimonial page:
"She has worked at The Meadows for almost 16 years and looks forward to it every day. "
I worry now about two things:
Are we and the "people in charge" actually asking and listening to the people who are affected or just basing our perceptions on what gets into the media?
Where is the balance between using segregation as the first and only option, and making sure that people who want and deserve different options are given the appropriate support ?
Defining Sheltered Workshops
Don't miss the section of The Meadows site called What is a Sheltered Workshop? It gives a specific outline as to what qualifies in the eyes of Oklahoma law.
What are your perceptions? Do you think the media has influenced them or are you basing them on specific (or isolated) examples? Would appreciate any feedback.
A recent article, Forgetting not an option: Horrors at Willowbrook State School remembered at annual CSI lecture caught my eye for two reasons:
I feel physically ill
I first heard the name Willobrook as a graduate student in the Disability Studies program at Syracuse University. During a course taught by Steven J. Taylor, we looked at disability in different media. It was a tremendous course, taught by a very skilled professor, researcher, and community advocate. Thinking back on it, I remember my own poor performance as a student. It was one of my worst. Watching this video makes the emotional and physical reactions I had to the content come rushing back. I'm completely aware of WHY I couldn't bring my A game to this course. (Trigger warning: This video is painful to watch for anyone, but parents of children with an intellectual disability will find it almost unbearable.)
This three minute clip of scenes is just the tip of the iceberg when it comes to what went on at Willowbrook.
I remember feeling completely and utterly depressed during the length of this course. The readings were bad enough, but to actually see the images of children and adults in this situation was immobilizing for me. Dr. Taylor even added personal accounts which made it more REAL. Even now I’m nauseous and my head hurts. I could not then, and still can't, understand how this happens.
One of the questions that took over my mind and blocked out my ability to be an intelligent student was how parents and family members could allow this to take place? I have no doubt that professionals convinced naive parents that institutionalization was in their child and family’s best interest. I’ve experienced that kind of pressure from well-meaning professionals first hand and know what it’s like. What I couldn’t wrap my head around was why it was allowed to continue. Did families NEVER visit their children once they were placed there? If they did, were they led to believe that the patients' behavior was a result of the disability rather than the inhuman conditions in which they were forced to live? What about the people that worked there? Several have said since that it was awful. Were they all so afraid of losing their jobs that they couldn’t speak out?
Seeing that Robert Kennedy condemned the place and still nothing was done for years just makes it even more incomprehensible to me.
and that the children live in filth, that many of our fellow citizens are suffering tremendously because lack of attention, lack of imagination, lack of adequate manpower. There is very little future for these children, for those who are in these institutions. Both need a tremendous overhauling. I'm not saying that those who are the attendants there, or who run the institutions, are at fault – I think all of us are at fault and I think it's just long overdue that something be done about it.
The 'Boys' In The Bunkhouse
In some ways, Dan Barry can be compared to Geraldo Rivera. The New York Times author brought similar atrocities to the attention of the public in his recent expose. What Geraldo did to expose institutionalization gone wrong, Barry has done for sheltered workshops.
Again, I'm left with more questions than answers. Did NO ONE realize what was going on here? Where were the families for all this time? Did people really think this was "normal" and okay?
The theme of this year's lecture was "Forgetting is Not an Option: Tragedies and Triumphs of American Deinstitutionalization."
In a chapter called "Institutions are Dying But are Not Dead Yet," (Deinstitutionalization and People with Intellectual Disabilities: In and Out of Institutions, 2005) Dr. Taylor talks about how the continuum of services is out of date and fallen out of favor.
When viewed from this perspective, it follows that people with severe disabilities will require the most restrictive and segregated settings. Herein lies the flaw: segregation and integration on the one hand, and intensity of services on the other, are separate dimensions. Any health-related, educational or habilitative service that can theoretically be provided in a segregated setting can be provided in an integrated setting.
This chapter is well written and gives compelling evidence of a system that started out being a road map to move away from segregation - but has turned into an excuse for continued exclusion.
My problem, as always, is how to go from the theoretical imperative to the reality of life as a parent.
Yes, we agree that we want things to change. We want our children to be accepted in the community and have the best life possible.
We also want them to get the help they need and to be safe. We don't want to think about the possibility that our children could have ended up at Willowbrook or Henry's Turkey Service. (There but for the Grace of God, go I)
The undeniable truth is - we're not there yet as a society - or these horrendous examples of abuse wouldn't continue to exist.
These and other horror stories from segregation can and should move us to action. The problem remains: How? And should people have their lives and routines abruptly disrupted in the name of progress for all? Is that the only way forward or are their better ways to move toward the ideal?
I don't know the answers but I will keep asking the questions.
It's a tiny state really, the smallest there is (area-wise). Slightly over a million people live there. A recent story in the Brown Political Review adds some detail to the story that has captured the attention of parents of adults with developmental and intellectual disabilities across the country.
They were recently involved in a DOJ investigation:
A year after the beginning of the judicial investigation, the Justice Department reported that Rhode Island had failed “to comply with the ADA and the minimum steps that [the state] must take to meet its civil rights obligations under the law.” The report found that, despite Rhode Island’s leading role over the last two decades in closing segregated state institutions for DD individuals, the state has violated the rights of these individuals to live meaningful lives and be integrated into their communities.
And now, they're setting precedent for the whole country. The question that remains is what happens when the workshops are closed? How many of the workers will actually find jobs in the community? How many will languish at home without "meaningful employment?"
...despite the judicial review, “Without a major social change, many of those individuals who are not going to be in the workshops are going to need to be doing something else.” Finding employment won’t be easy: Rhode Island has the highest unemployment rate in the country, which poses a significant obstacle, especially when combined with already entrenched structural disadvantages for the developmentally disabled. But the problem doesn’t fundamentally lie in unemployment rates. Rather, it is in the culture and stigmas surrounding disabled individuals on the national stage. While segregated workshops are in decline, the misconceptions surrounding disabled individuals must also be dispelled.
Will a "landmark decision" create the social change that is needed to have everyone be welcomed into the community? I think history has given us our answer several times already.
The issue of exploitation is real and needs to be addressed. The full article has an interactive US Map that shows how many certificates have been awarded in each state to pay people with disabilities less than minimum wage. There are arguments being made on both sides of this issue as well, but like anything else, it boils down to human beings interpreting what is legal and what is moral.
To most, this map represents the disparity in pay between "average" workers, those with disabilities, and those with cognitive disabilities. To this mom, it also represents the number of people who will need to find a new road. This road will be different from the one they have been on and spent years learning to navigate. Some will find this detour challenging at first, but they'll adjust. They'll be able to change gears and keep rolling because they have the resources necessary to handle the rough roads. What worries me is the number of travelers who won't be so lucky. Some of them will be left standing by the side of the road wondering what happened.
The government, courts, and "powers that be" are in react mode. They're looking for immediate solutions to problems that have existed for quite some time. Many people have been working pro-actively to try to find solutions for years. Some times we need a jolt in order to change course. An unexpected storm can send us in a different direction so that we end up where we're supposed to be. I'd like to think that all of the travelers will find their way and be better for it. Unfortunately, those who already exist on the margins, those on the shoulder of The Road, are more likely to be passed by in the name of good intentions. We all know who those unlucky pedestrians will be: the poor, those whose cultural differences make it difficult to navigate "the system," and the lonely. Those without a voice to shout out and say "Wait!" "Slow down!" "Give me a chance to catch up and come along!" Maybe even, "No thanks, I like this road and want to stay here."
As the changes come we here on The Road We've Shared are asking the questions: What do you think? What has your experience been like? What opinions have you formed and why? We aim to give everyone who wants to be heard a place to speak up and share their story. If you have one you'd like to share, please take a few minutes and fill our our online survey about jobs and sheltered workshops.
In the meantime, we'll be discussing the implications of this court decision, the current status quo, and creative employment solutions all month here on The Road, and our Facebook page. We hope you'll join us.
Add Your Voice to Our Survey
A few weeks ago, there was a "landmark" decision about sheltered workshops that may end up signalling the end to all work opportunities that are deemed exclusive.
I wrote about my initial thoughts in a previous post:
Legal actions forced de-institutionalization and inclusion in schools. This IS a good thing - but not appropriate for everyone. Now, states and private companies are afraid of lawsuits and that is hindering their ability to provide services for those who really need them.
Since then, we've had a discussion online in an IDSC group, and gotten more input from other parents. I've also created an online survey for anyone who is the parent/guardian of an adult with Down syndrome to share their thoughts.
We've gotten 15 responses so far and the results are mixed. The survey asks about personal experience and thoughts about whether "sheltered" environments are exploiting our loved ones and should be eliminated. So far, 4 people think yes, they are bad in every sense and better alternatives should be created. However, 7 respondents aren't so sure that this is the way to go.
You can help!
Share the link to our survey on Facebook, Twitter, your blog, and anywhere else. ( http://bit.ly/DsJobs )
The truth is, unless we make our voices heard, we won't have any say in the matter. Other states are already following suit. We've seen how one court decision can set a precedent and cause other states to react, sometimes without thinking it through all the way. (i.e. de-institutionalization and inclusion in schools)
As we spend some time this month talking about jobs, I hope you'll take a few minutes to complete our survey, share your own experience on our Facebook page, or send us a picture of your son/daughter/loved one at work for our Pinterest Board. If you've got a story to share, let us know and we'll get it posted to our Guest Blog page.
There's LOTS to talk about this month so stay tuned and join the discussion. Let YOUR voice be heard!
Also, if you find any good stories already posted online, please share them with us. I found this great story on "Adventures with Beth." Congratulations Beth on your one year anniversary at Little Caesar's!
Recent activity in the courts and on Ds social media has focused on the issue of doing away with sheltered workshops. I'd like us, as a community, to come up with a statement that says what we think and how we feel. Here are my initial thoughts. Please feel free to critique and add yours to them. We hope to have a comprehensive statement on the issue for next month when we focus on jobs as the topic of the month.