Sometimes I get worried thinking about my 30-year old brother, CJ. I think of how our parents are getting older. I think about where he can get help since he is not in school. I think of what he needs to be healthy. I think of how people treat him.
All of this thinking takes me down a path of questions with no end.
What if something bad happens to my parents?
What if my parents’ health gets worse?
What if my mom can’t care for my brother CJ anymore?
What if my dad can no longer work and provide for the family?
What if CJ does not get the help he needs?
What if I have to stop working to care for CJ?
What if CJ gets upset because he can’t express his feelings?
What if he hurts himself again?
What if something bad happens to CJ because people are afraid of him?
What if someone calls the police on him again?
What if something bad happens to CJ because people are afraid of him?
What if someone calls the police on him again?
What if they put him in the hospital again?
What if they give him drugs to make him sleep again?
What if people keep treating CJ like he is not human?
Hello, my name is Cheryl Dolan and I work in human services.
I moved from the UK in 1999, when many humans service agencies could not find staff and went overseas to hire them. We still have this problem today. We need to look at why this is and what we can do to change it.
Why is there a shortage in staff?
More people need support and services than before so need more staff
Wages are low and not too many ways to get promoted
Lack of people who are trained to do the job well
How does this affect people?
People have high turnover or unqualified staff working with them
People not getting the best care
Programs have to close, People are losing services or are on wait lists
Families become stretched and have no help
What are human service agencies doing to address the issue?
Looking at how technology can be used to support people and reduce some staffing needs
Working with local and federal government to support them by applying initiatives for state employees to human service agencies
Looking at how to attract, train, and retain skilled employees.
How can you help fix this?
Make your voice heard! Make the people you vote for know you want to see increase in funding for wages
Support agencies seeking increased funding to provide higher wages for staff
As a doctor for children, I often talk about sleep during wellness and sick visits.
Sleep is an important life skill. It teaches children how to calm themselves and rest. Parents have an important role in helping children to healthy sleep habits. Improved amount and quality of sleep affect children’s behavior and abilities to think.
Below I will discuss some tips that parents can practice for healthy sleep habits.
Decide with your family when is a good time to start sleep training.
Decide how many hours of sleep your children need. Infants sleep for 12-14 hours. Hours decrease gradually as children get older. On average, children need 10 hours of sleep. If they nap during the day, do not forget to account for nap time to the total daily sleep time. For example; 2 hours nap in the afternoon will leave your children with only 8-10 hours of sleep at night. That can be a reason why children go to bed late at night or wake up very early and refreshed.
Talk to your children about (tonight’s plan). For example “we will take a bath, read a story, and then it is bedtime”. Change the language based on your children’s understanding. Young children would benefit from (first…then strategy). For example “first we take a bath then we read a story”. Use picture books to share stories about sleep.
Use a reward system. Rewards can be increased or spaced out. Rewards can be an activity the children will enjoy, for example spending play time with parents, or reading a favorite book together.
Do not get discouraged quickly if some attempts are not successful. Experimenting is a key. Some plans do not work the first time or at all. Try different things. For example, some children may prefer bedtime stories and some may prefer bedtime song. Other different options parents can try; white noises, a night light, a security object/blanket or all of them.
Avoid high affect games or TV before bedtime. Bath and stories can help to relax your children.
Remind your children that bedtime is soon. For example “5 more minutes to bedtime”. Some children do not tolerate transitions quickly. You can use a fun or colorful alarm clock as a reminder.
Increase their Melatonin Dark room, with no TV or electronic devices.
Create sleep associations. Children like their routines. It is ideal if they go to sleep in similar conditions every night (same bed, room, lights off etc.).
For younger children, put them to bed semi-awake. Allow time for them to calm themselves. This way they learn to go back sleep if they woke up the middle of the night.
If your children cry in the middle of the night, attend to their needs. Comfort them, but avoid picking them up or bringing them to your bed.
The cultural appropriation of disability is a major obstacle in the struggle to achieve a just society in which individuals with disabilities are treated with dignity and receive access to supports and services to live richer, self-determined lives.
This article addresses two forms of cultural appropriation. The first form is the use of images of individuals with disabilities by able-bodied persons to promote a charity campaign/advocacy issue or to describe a current event. The second form of cultural appropriation relates to the use of images or objects associated with disability for performance art that is unrelated to disability advocacy.
When non-profit organizations or news corporations use images of individuals with disabilities that are meant to be inspirational or cause an emotional reaction, the population of individuals with disabilities as a whole are held back. This is because the images contribute to the reputation that individuals with disabilities are helpless, pitiable, and/or inspiring. The problem with being seen as inspiring is that often it stands in the way being seen as an equal. A recent example is a news story about two North Carolina State students on the football team who sat next to a student with a disability at lunch (news story). This story was widely circulated and was even posted by AUCD on Facebook. The troubling implications of this story were passionately described by Karin Hitselberger in her blog post, “Being My Friend Does Not Make You a Hero.” Hitselberger calls for change by writing: “It’s time for us to stop being inspired and surprised when we see disabled and nondisabled people engage in everyday interactions with one another. It’s time for us to stop praising able-bodied people for associating with or being friends with disabled people” (claiming crip blog). It was later revealed that the students eating lunch together were already friends and had no idea their photo was taken (real story of photo).
Those who are in a position to use these images should ensure accuracy and carefully consider the unintentional messages this content could be sending. Seeking advice from individuals with disabilities is recommended.
It is equally troubling when images or objects associated with disability are used to captivate or shock audiences in performances that are unrelated to disability advocacy. Musicians Lady Gaga and Rick Ross have used this form of cultural appropriation in live performances and music videos. Of the several live and on-screen performances in which Lady Gaga used a wheelchair, her performance as a wheelchair bound mermaid has received the most attention. Following the performance, Gaga was attacked by a group of people who threw eggs at the young starlet. It remains unclear if the attackers’ outrage was related to her inappropriate wheelchair use. Later, when Gaga and musician Bette Midler engaged in an argument about whether or not Gaga stole Midler’s act, neither of them seemed to be aware of the fact that the act was offensive.
In the case of Rick Ross, the rapper performed in Lil Wayne’s music video, “John,” while seated in a wheelchair with adornments to simulate movement called spinners. The only purpose of the wheelchair was shock value.
It was disturbing to see these musicians make light of the vital use of wheelchairs by using them for decoration. Kristin Guin, founder of Queerability, agrees. Guin, who identifies as autistic and bisexual, recommends bringing the inappropriate wheelchair use to the attention of the performers. “We would hope that the celebrity apologizes and agrees to remove the content,” states Guin.
We in the community of disability activists should not be paralyzed by anger over these instances of cultural appropriation. Instead, we should create opportunities to educate those who have yet to understand how to perceive and treat individuals with disabilities as equals. I call on anyone who encounters this type of behavior to make their opinions known.
According to the American Speech-Language Hearing Association “communication disorders are among the most common disabilities in the United States” (ASHA, 2008). More specifically, national demographic data gathered in 2003 identified that of the estimated 6,100,000 children between ages 3-21 served under the Individuals with Disabilities Education Act (IDEA) in the public schools, approximately 24% of students (1,470,000 students) received services for a primary speech or language disorder (U.S. Department of Education, 2005). However, despite this clear need for services, there is a well-documented shortage of speech-language pathologists (SLPs; American Association for Employment in Education, 2008; Chmelynski, 2005).
In order to compensate for the shortage of SLPs and the need for speech-language intervention services school systems have started to employ innovative strategies, such as using telepractice, to maximize existing resources and increase access to SLPs. “Telepractice is the application of telecommunications technology to the delivery of speech language pathology … services at a distance by linking clinician to client/patient or clinician to clinician for assessment, intervention, and/or consultation” (ASHA, 2013), and is a recognized form of service delivery within the field of speech pathology.
Using telepractice does not mean investing in costly equipment and technological infrastructure. In fact, telepractice can be implemented successfully using off-the-shelf and readily available technology. The most important components are computers with webcams, access to high speed Internet (preferably hard-wired), as well as a HIPAA compliant videoconferencing program (such as GoToMeeting). Using these tools, a SLP can replicate a face-to-face interaction on the computer, and can therefore provide intervention services from a remote location using the Internet. This means that SLPs can be accessed to help meet the needs of students with communication impairments, and the shortage of SLPs can be addressed using technology.
This movement within the field of speech-language pathology towards telepractice service delivery is exciting, and the evidence in support of successful implementation with students with speech, language, and communication needs is growing (Boisvert, 2012; Hall, 2013; Hall & Boisvert, 2012; Theodorus, 2011). It is important to note, however, that telepractice is not necessarily an effective method of service delivery for all students, and careful consideration of client candidacy needs to be undertaken before starting any services.
American Association for Employment in Education. (2008). Educator supply and demand in the United States: 2008 Executive Summary. Columbus, OH: Author.
American Speech-Language Hearing Association. 2013. Professional Issues – Telepractice.
Boisvert, M. (2012). An Investigation of the Efficacy of Speech and Language Interventions with Students with ASD Using Telepractice. Open Access Dissertations. Paper 536.
Chmelynski, C. (2005). Schools are having a hard time finding enough speech pathologists. School Board News.
Hall, N. (2013). An Investigation of the Efficacy of Direct and Indirect AAC Service Provision via Telepractice. Open Access Dissertations. Paper 743.
Hall, N., & Boisvert, M. (2012). Telepractice to provide Language Intervention to a Student using AAC: A case study. International Society for Augmentative and Alternative Communication, Pittsburg, PA.
“But I do not want cantaloupe, I want Twinkies!” she declared, pointer finger straight up, “they taste good with milk and tea.”
“But, Twinkies,” I stammered, “that’s – that’s just not breakfast food!” My counter argument came out as my hand went on my hip.
“It’s my human right and you can’t stop me,” she said loudly, her back stiffening. I recalled that Amelia was a regular attendee at her group home’s human rights meeting, in which people role played standing up for their human rights in decision-making at all levels – from self-defense to food choice.
“On the one hand,” I thought, “this human rights training is totally right on, but on the other hand, how could they let a person with pre-diabetes eat Twinkies, of all things, for breakfast?”
Agitated, my voice now met hers in decibel. “It’s my house, and my wallet, and we don’t eat Twinkies for breakfast at my house!” I stammered, attempting to impersonate a parent, now that our parents were dead.
The parental tone did nothing to further our détente. Her voice even louder now, Amelia became more adamant “They let me eat it at MY house. I went to MY human rights advocate. I eat one for breakfast with tea and milk. It is what I eat for breakfast. I WANT it for breakfast.”
This seemingly simple incident in the grocery store is actually about the foundation of modern disability policy writ small and large – the implementation of the “dignity of risk.” Coined during the de-institutionalization era by disability studies scholar Robert Perske at first used this phrase to challenge disability system workers about:
“…going overboard in their effort to protect, comfort, keep safe, take care and watch…this overprotection can…consequently prevent the retarded individual from experiencing risk that is essential for normal growth and development.” (Perske, 1972: 24)
By reflecting on the potential gain from experiencing day-to-day risk, Perske championed the need for people with intellectual disabilities to be able to take such chances as well. While I am doubtful that Perske thought much about Twinkies for breakfast, he did comment on the need for ‘prudent’ risk taking, stating:
“Knowing which chances are prudent and which are not—this is a new skill that needs to be acquired…Now we must work equally hard to help find the proper amount of risk these people have the right to take. We have learned that there can be healthy development in risk-taking and there can be crippling indignity in safety!” (Perske, 1972:24).
Perske’s commentary has informed the disability service community to think deeply about how to best support people with intellectual disabilities living and working in the community. And yet, I wonder, have we really had the conversations we need to have as service providers and advocates about the nitty gritty of the implementation of the dignity of risk – say – when it comes to Twinkies?
“Well,” I thought, “here I am, on the front line of implementing this important principle via arguing with my sister about the merits of a healthy breakfast versus the demerits of Twinkies. “Somehow,” the cynical me thought, “we’ve taken a wrong turn on this human rights stuff.” The disability rights movement supporter in me nearly passed out at this thought.
Taking a deep breath – and a new tack – I posed this question to Amelia. “OK, I understand and agree that it is your right to choose Twinkies, but will you at least ALSO have some fruit, and think about how Twinkies impact those sugar levels the doctor warned you about last week, you know, because of how you’ve been feeling sick sometimes?” As her sister and pseudo parent-figure, I felt compelled to lecture, and yet I also felt like a hypocrite, failing in my chance to effectively implement of the dignity of risk.
I was met with silence as Amelia defiantly placed three packages of Twinkies in the shopping cart. So, as many parents have likely done, I bought the Twinkies in order to avoid a scene in the grocery store. And, needless to say, Amelia had her Twinkies for breakfast the next morning, with tea and milk – and did give a bowl of cantaloupe a try.
While Amelia has since moved on from Twinkies to Count Chocula’s best, we do continue our discussion of her “sugar problem” and the importance of healthy choices, but the process is slow. I am often stumped about how to support an adult with an intellectual disability on making choices, as I believe a balance must be struck between supporting self-determination that incorporates the ‘dignity of risk’ with the need to support a person’s health “security.” Or, maybe that’s just an overprotective sister talking.
So, when I find myself struggling with Amelia over such issues as Twinkies – and more recently dating, sexuality and contraception – I look back to Perske to guide me. Recently, in looking over his seminal writing on the topic, Perske also addressed the disability service community, asking them to look within:
“Overprotection can keep people from becoming all they could become. Many of our best achievements came the hard way: We took risks, fell flat, suffered, picked ourselves up, and tried again. Sometimes we made it and sometimes we did not. Even so, we were given the chance to try.” (Perske, 1972:24)
And in reading this passage, I was able to step outside of myself. I look back at myself and see that it has taken me too long to realize that much of the learning that needs to be done is learning on MY end. While my health-focused conversations with Amelia go on, I have learned to back off and respect my sister in ways I never thought I could. And in turn, Amelia has, on occasion, surprised me in asking for melon for breakfast.
Perske, R. 1972. “The dignity of risk and the mentally retarded.” Mental Retardation 10:24-27.
Note: The name “Amelia” is a pseudonym and is used to protect the privacy of the author’s sister
Dr. Elspeth Slayter is a Fellow in the Advanced Leadership in Neurodevelopmental Disabilities Program at the Eunice Kennedy Shriver Center of the University of Massachusetts Medical School. Dr. Slayter is also an Associate Professor of Social Work at Salem State University in Salem, Massachusetts.
“My Child was diagnosed with autism yesterday. The clinic gave me a huge packet of information. The resource specialist told me the first call I should make was to your Resource Center to figure out my coverage.”
At the Autism Insurance Resource Center, this is a typical call. And while our mission is to provide information to help families understand their insurance, sometimes what I really want to do is reach through the phone and just give them a hug. I want them to know that, even though it might have taken all their strength this morning just to get out of bed and put one foot in front of the other, there’s so much to be hopeful for, and it gets easier. Really, it does.
So after I’ve helped them navigate their insurance, I tell them that I’m a Mom who’s been there. I know what they’re going through. And I tell them that, if they have one ounce of bandwidth left, they might want to check out Diary of a Mom, by Jess Wilson.
So for our first blog of this month, I’m delighted that Jess has shared one of her many brilliant posts “Welcome to the Club”. Because in my opinion, no one says it better than she does. Thank you, Jess.
May 1, 2009
My dear friend,
I am so sorry for your pain.
Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it.
I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear.
I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time.
I never would have wanted to pass it on to you, my love. I remember so well suffocating under the weight of it, struggling for breath, fighting to throw it off while wrapping myself in its awful warmth, clutching its worn edges for dear life.
I know that it feels like it’s permanent, fixed. But one day down the line you will wake up and find that you’ve left it next to the bed. Eventually, you’ll hang it in the closet. You’ll visit it now and then. You’ll try it on for size. You’ll run your fingers over the fabric and remember when you lived in it, when it was constant, when you couldn’t take it off and leave it behind. But soon days will go by before you wear it again, then weeks, then months.
I know you are staring down what looks to be an impossibly steep learning curve. I know it looks like an immovable mountain. It is not. I know you don’t believe me, but step by step you will climb until suddenly, without warning, you will look down. You will see how far you’ve come. You’ll breathe. I promise. You might even be able to take in the view.
You will doubt yourself. You won’t trust your instincts right away. You will be afraid that you don’t have the capacity to be what your baby will need you to be. Worse, you’ll think that you don’t even know what she needs you to be. You do. I promise. You will.
When you became a mother, you held that tiny baby girl in your arms and in an instant, she filled your heart. You were overwhelmed with love. The kind of love you never expected. The kind that knocks the wind out of you. The kind of all-encompassing love that you think couldn’t possibly leave room for any other. But it did.
When your son was born, you looked into those big blue eyes and he crawled right into your heart. He made room for himself, didn’t he? He carved out a space all his own. Suddenly your heart was just bigger. And then again when your youngest was born. She made herself right at home there too.
That’s how it happens. When you need capacity you find it. Your heart expands. It just does. It’s elastic. I promise.
You are so much stronger than you think you are. Trust me. I know you. Hell, I am you.
You will find people in your life who get it and some that don’t. You’ll find some that want to get it and some that never will. You’ll find a closeness with people you never thought you had anything in common with. You’ll find comfort and relief with friends who speak your new language. You’ll find your village.
You’ll change. One day you’ll notice a shift. You’ll realize that certain words have dropped out of your lexicon. The ones you hadn’t ever thought could be hurtful. Dude, that’s retarded. Never again. You won’t laugh at vulnerability. You’ll see the world through a lens of sensitivity. The people around you will notice. You’ll change them too.
You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you.
You will read more than you can process. You’ll buy books that you can’t handle reading. You’ll feel guilty that they’re sitting by the side of the bed unopened. Take small bites. The information isn’t going anywhere. Let your heart heal. It will. Breathe. You can.
You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.
You will dig deep and find reserves of energy you never would have believed you had. You will run on adrenaline and crash into dreamless sleep. But you will come through it. I swear, you will. You will find a rhythm.
You will neglect yourself. You will suddenly realize that you haven’t stopped moving. You’ve missed the gym. You’ve taken care of everyone but you. You will forget how important it is to take care of yourself. Listen to me. If you hear nothing else, hear this. You MUST take care of yourself. You are no use to anyone unless you are healthy. I mean that holistically, my friend. HEALTHY. Nourished, rested, soul-fed. Your children deserve that example.
A friend will force you to take a walk. You will go outside. You will look at the sky. Follow the clouds upward. Try to find where they end. You’ll need that. You’ll need the air. You’ll need to remember how small we all really are.
You will question your faith. Or find it. Maybe both.
You will never, ever take progress for granted. Every milestone met, no matter what the timing, will be cause for celebration. Every baby step will be a quantum leap. You will find the people who understand that. You will revel in their support and love and shared excitement.
You will encounter people who care for your child in ways that restore your faith in humanity. You will cherish the teachers and therapists and caregivers who see past your child’s challenges and who truly understand her strengths. They will feel like family.
You will examine and re-examine every one of your own insecurities. You will recognize some of your child’s challenges as your own. You will get to know yourself as you get to know your child. You will look to the tools you have used to mitigate your own challenges. You will share them. You will both be better for it.
You will come to understand that there are gifts in all of this. Tolerance, compassion, understanding. Precious, life altering gifts.
You will worry about your other children. You will feel like you’re not giving them enough time. You will find the time. Yes, you will. No, really. You will. You will discover that the time that means something to them is not big. It’s not a trip to the circus. It doesn’t involve planning. It’s free. You will forget the dog and pony shows. Instead, you will find fifteen minutes before bed. You will close the door. You will sit on the floor. You’ll play Barbies with your daughter or Legos with your son. You’ll talk. You’ll listen. You’ll listen some more. You’ll start to believe they’ll be OK. And they will. You will be a better parent for all of it.
You will find the tools that you need. You will take bits and pieces of different theories and practices. You’ll talk to parents and doctors and therapists. You’ll take something from each of them. You’ll even find value in those you don’t agree with at all. Sometimes the most. From the scraps that you gather, you will start to build your child’s quilt. A little of this, a little of that, a lot of love.
You will speak hesitantly at first, but you’ll find your voice. You will come to see that no one knows your child better than you do. You will respectfully listen to the experts in each field. You will value their experience and their knowledge. But you will ultimately remember that while they are the experts in science, you are the expert in your child.
You will think you can’t handle it. You will be wrong.
This is not an easy road, but its rewards are tremendous. It’s joys are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.
You will be OK.
You will help your sweet girl be far better than OK. You will show her boundless love. She will know that she is accepted and cherished and celebrated for every last morsel of who she is. She will know that her Mama’s there at every turn. She will believe in herself as you believe in her. She will astound you. Over and over and over again. She will teach you far more than you teach her. She will fly.
You will be OK.
And I will be here for you. Every step of the way.
Audio Books can be obtained through talking book libraries, book stores, public libraries, and the internet. Here are some great resources available to help those with disabilities enjoy the pleasure of hearing a book.
Perkins Braille & Talking Book Library
provides FREE services to Massachusetts residents of any age who are unable to read traditional print materials due to a visual or physical disability. Services include free audio, braille and large print books, magazines, special equipment required to play recorded special materials and free delivery and return by mail.
Located at 175 North Beacon Street in Watertown, MA
Phone: (617) 972-7240 or 800-852-3133
is the largest source of educational books and textbooks on tape in the
world. Individuals pay a $99 annual fee to borrow unlimited audio books.
Located at 2067 Mass Ave, 3rd floor in Cambridge, MA.
Choice Magazine Listening
selects and records memorable writing from approximately 100 leading magazines. It is a free service available for blind, visually impaired or physically handicapped subscribers on new digital Talking Book Cartridges playable from the Library of Congress.
The Talking Information Center
is a non-profit reading service that broadcasts newspapers, magazines, books, and special consumer information to visually-impaired listeners.
Digital audio books can be downloaded directly to your computer, usually
in a format like an MP3. After you download them, they can be transferred to the listening device of your choice. Some popular listening devices like iPod and iPhones support downloading audio books directly from the internet.
Recently I visited Roz Rowley in her classroom at Perkins School for the Blind. I was amazed to learn that she has been a Teacher of the Visually Impaired for 42 years. Wow! I wanted to meet with her to learn more about what the Perkins Library means to her as a teacher and how it impacts her students.
After all, who would know better?
As we talked, Roz spoke about all the ways she uses the Library. Through our conversation, we discovered together that the Library is an important tool used to teach self-reliance. It also gives her students access to the same information that their sighted peers have.
Roz teaches a class, English for Real Life. The curriculum includes everything from returning a digital talking book through the US mail to completing applications, to downloading a book.
All important life skills. All related to the Library.
Something as simple as encouraging a student to place a call to the Library by themselves teaches important, independent phone skills.
Library offers equal opportunities
The Library provides students at Perkins and across Massachusetts with the same opportunities for learning as sighted students.
They have books, just like sighted students. They write book reports. And research.
Perkins Library has a dedicated Reference Librarian who meets with students each year so they know how to use the library. Perkins graduates keep that connection as they enter the world outside of the school.
Students also learn to use the Newsline service. By calling Newsline they can read today’s newspaper and contribute to a discussion about current events.
Just like sighted students.
Newsline also has job postings so that students can start thinking about different employment options. People who are blind are typically unemployed or under employed. At least knowing what kinds of jobs are out there is a start.
I used to think about our Library simply as a way for people to enjoy reading. My conversation with Roz gave me a whole new perspective.
Our Library helps students build self -esteem and independence.
Our Library allows students become informed citizens as they go out into the “real world.”