Telling people which words to use is tricky at best, and rude and insensitive at worst. At a very young age we choose the words we use and the way we speak to emulate and impress those we find important. It starts with parents and siblings, and changes to our friends and groups with which we want to identify. When you correct someone you are not only criticizing the speaker, but all the people he/she emulates, including parents, siblings, and friends. Words are an important part of who we are.
As painful as it may be for us to be corrected, or to correct others, think (knowing how important words can be to people), how devastating it would be to hear people you respect use words that are degrading. Think how hard it would be to hear people talk about you as though you’re helpless or dangerous every day. Think about how we use words to draw lines between ourselves and others. We might not realize we do this, and we might not realize it has lasting negative impacts on people we support, but why do we take a pill while the people we support receive a med pass? Why do we get to go to the store while the people we support go on an outing? Why do we get upset while the people we support have a behavior?
We may not realize it, but when we differentiate our language we draw lines and we prevent people from holding the same place in our minds as our friends and family. We need to be careful to use words that are not only fair and respectful, but also that send the message that those we support are our equals. The men and women we support do not need unique words just because they require a different kind of support than we might need. There is no telling which must come first; do we need to see people as our equals before we can speak appropriately, or do we need to speak appropriately before we will see people as our equals? As tricky as changing the words we use might be, it is certainly something we can do right now to impact the people around us.
How do we change the words we use?
It is not easy to change the words we use. You can’t just remove a word from your head. People who embrace the support ideal (instead of the care ideal) use the word care on a daily basis. The only way to fix this is to rewrite the appropriate word over the undesirable word, and unfortunately, this takes constant effort. You must correct yourself EVERY TIME you use the undesirable word. You must make a new habit… but be careful, there’s no telling what the next appropriate word will be. Get ready to adapt.
My college years were a period of enormous personal growth for me. Not only was I starting the foundation for what would later become my future career, but I was also faced with the decision of what type of person I wanted to become both personally and professionally. While this transition into adulthood wasn’t easy, my journey into adulthood would have been significantly more difficult had I never met Dawn. Dawn was not only a dear friend, but is one of my greatest mentors in life.
Dawn’s impact shaped the person I became and changed not only the way I viewed my relationships, but also how I viewed myself and my capabilities. She taught me so many life lessons, the greatest life lesson being the meaning and the importance of dedication and sacrifice.
Dawn was someone that never gave up on me. She was a supporter, teacher, a mentor, and a friend. She was present for all of my achievements and successes in life, and more importantly, was there through all my mistakes and failures. She guided me and encouraged me, which gave me the confidence to try again and never give up.
Toward the end of our 13 year friendship, before Dawn passed away from a long battle with cancer, we had a discussion about what she had meant to me. She responded with the story “eggs and bacon”. She said in life that we all have chickens and pigs. While both these animals make sacrifices to provide for us, their sacrifices are not measured equally. From the chicken sacrifice comes the egg, which is great, but not close to the sacrifice that the pig gives in order to provide us with bacon.
She told me that we all have plenty of eggs in our life, but it is the sacrifice of bacon that allows us to see the full potential of what we can truly give in life. Great sacrifice comes not only from our small efforts, but from every part of who we are. When we are making a conscious effort to give from our mind, body, and spirit, we are sacrificing at our full potential.
Even though Dawn passed away some time ago, her sacrifice serves as a daily inspiration to the type of person I not only want to be, but choose to be on a day to day basis. Her sacrifice has made me a better person, spouse, parent, and employee because it made me realize that how much we give ultimately determines the impact and reputation we leave on our community.
Shanda McClaren | Area Director of Central Services
You, the reader, should not take this negatively; what I mean is: make your life meaningful, interesting, and even ENVIABLE! A moment from past training often crosses my mind regarding this topic; Dr. Tom Pomeranz often likes to stir up feelings within us and give us a different perspective when thinking about our lives and the lives of the people we support. “Do you have an enviable life? Do the people you support have an enviable life?”
Often times, the answer is NO! Well, there is no time like the present to change this. When we have a life, it becomes easier to help others “get a life” and find what they enjoy doing and how they can make their lives more meaningful and enviable. If you sit back and think long enough, you will begin to think of all the things you do, all the things you are responsible for, and you will begin to realize all of this defines you!
How can you help the people you support realize their likes, dislikes, preferences, hopes, dreams, goals, ambitions? Dig deeper! You can ask, observe, introduce, suggest, encourage, and support others. To get the brainstorming started, here are some things to discover with the person you support:
– Walk at a park
– Go to the Gym
– Community Activities?
– Sports? (To play and/or to watch)
– Bars/Live music?
– DIY projects?
– Learning something new? Classes at local college or school?
– Traveling? Plan a vacation!
– Going out for coffee and/or breakfast with friends?
– Museums? Zoo?
– Beer/Wine tasting?
– Haunted houses?
– Go-karts? Bumper cars?
– Shopping/ “antiquing”/bargain finding
The list could continue on… Share your hobbies and your interests because this can lead to more opportunities for positive interactions and experiences in your life and in the lives of the people you support. Get a life!
ILC Director of Southeast Area Services in NEB
As our understanding of disabilities, supports and equitable treatment improves, so should vocational opportunities.
When I started working with people with developmental disabilities (nearly 15 years ago), it was common for all of the work “opportunities” to be based on contract work in workshops. People spent hours putting small items into bags, those bags into boxes, and those boxes on trucks. The grueling, repetitive work paid pennies per bag, and the motivated worker earned a few dollars a day. When there was no contract work, people colored, made things with clay, put puzzles together, or waited for something else to do. Sheltered contract work serves a purpose, and is not all bad, but it can’t be the only thing offered.
As our understanding of disabilities, supports, and equitable treatment improves, so should the opportunities people have. To stay relevant, vocational sites must innovate and provide the same opportunities everyone has. Ideally, this would include meaningful paid work in a variety of fields with room for promotion and growth. In practical terms, this means a variety of work, some of it volunteer, some of it created, to provide the skills and experience needed to get the meaningful paid work for which we all aspire.
While we wait for the community to catch-up, providers can create the following opportunities to support people vocationally:
Retail/customer service: Providers can open, or partner with retail or other businesses that offer experience working with customers, handling money, etc.…
Production/manufacturing: Providers can create and sell a product. This allows the people they support to open their own businesses or sell their merchandise on sites like Etsy, Craigslist, and eBay.
Job coaching/career development: People with little job experience need support creating resumes, filling out applications, developing interviewing skills, preparing for work, and understanding what options are open to them.
Volunteer: If paid work is unavailable, people can get job experience and skills through volunteer opportunities. This work should relate to the interests of the person supported, and should not be the result, but a way to get a meaningful job.
It’s not enough to offer a few options. Everyone has unique interests, skills, and goals. We need to recognize and support a variety of needs, hopes and dreams. We will only do that if we continue to innovate and take the interests of the men and women we support seriously. A workshop will no longer be enough. Innovation in vocational opportunities is needed to make the work for people we support meaningful.
We are encouraging passive participation in safety from the men and women who most need to take an active role.
As a company that supports people with developmental disabilities, abuse and neglect is an important issue, and something we take very seriously. I have no doubt that other agencies share our concern. With all this concern, a surprisingly high number of people with disabilities are abused at some time in their life. Reports suggest that as many as 83% of women and 32% of men with disabilities are victims of sexual assault.* Additionally, 49% of those victims will experience 10 or more abusive incidents.† It’s troubling that so much effort could go into something and still show the results listed above. What’s even more troubling is that 33% of the abuse comes from family or foster family members, and 25% are service providers. ‡ Most of the abuse comes from people who are entrusted with the safety and wellbeing of the victim.
If teaching people to recognize and report abuse has such poor results, it is necessary to reevaluate our practices. What can we do to better support people and prevent abuse? Are we doing anything now that enables or encourages abuse?
The only way we will be successful in reducing abuse is if we include the people who are most vulnerable in their own safety. Currently, we encourage passive participation from the people who most need to be active. Common practices, such as walking into restrooms or bedrooms without knocking, hugging, and touching strangers (i.e. new Direct Support Professionals), replace normal warning signs with a numb acceptance. When someone’s privacy is invaded, it is rare for that person to do the thing we most expect, such as yell and push the invader out of the room. If a person in supports were to scream and kick someone out of his/her room, it will not be congratulated, it will be ‘corrected.’ We are encouraging people to behave in ways that make them targets.
We need to take a serious look at our behavior and the detrimental effects we have on the safety of the people we support. We cannot keep everyone safe from everything; we must instead teach people to be safe and advocate for themselves as much as possible. We need to make sure people have a voice when they feel they have been mistreated. We need to make sure people don’t feel comfortable with strangers, touching them in ways that could lead to abuse. We need to recognize that our hugs could be desensitizing people from the fear of contact with abusers. We need to respect space and privacy, and encourage people to do the right thing when they are invaded.
Drew Johnson | Director of Training and Development
* Johnson, I., Sigler R. 2000. “Forced Sexual Intercourse Among Intimates,” Journal of Interpersonal Violence. 15 (1).
† Valenti-Heim, D., Schwartz, L. 1995. The Sexual Abuse Interview for Those with Developmental Disabilities.
‡ Sobsey, D. (1988) “Sexual Offenses and Disabled Victims: Research and Practical Implications.” Visa Vis, Vol.6 NoA.
People with developmental disabilities deserve the same rights as adults in society, regardless of ability.
Most people don’t have to earn the respect and privilege that comes from adult status. It is a product of living and comes without consent. For example, at the age of 18 or 19, it is your right to live on your own, sign a lease, buy a car, but most importantly, it is the freedom to live a life that you have always dreamed of.
On the other hand, those who remain at home often have limited freedom because they live under someone else’s roof, which comes with a set of rules. The history of how many people with intellectual and/or developmental disabilities have lived is frightening. Many have or continue to live a sheltered lifestyle, are kept from doing things their peers do, have special diets, are talked to as if they can’t hear, and have a bed time (yes, a bed time).
Often, people with developmental disabilities spend their entire lives trying and failing to be seen as adults, but they shouldn’t even have to try. It is common for someone with less ability to be spoken to as though they are a child; with a higher voice intonation and a condescending rhythm. People with developmental disabilities are often kept from common experiences, such as going to bars, traveling, getting a job, voting, driving, getting married… etc. And even though people who are in the supporting role (parents, guardians, direct support professionals, service coordinators…) are the ones who keep these life experiences from happening, they are the same people who use the absence of these events as an excuse to perpetuate the childlike expectations they already have. How is the person we’re supporting ever going to gain adult status if we use the excuse that he/she “likes cartoons” as our argument, especially when we are the ones who have kept all but cartoons from her/him?
Some guardians may feel comfort in seeing those we support as children when rights are restricted. It might be how we can feel OKAY about assigning bedtimes, scheduling doctors’ appointments, restricting food/drink, managing money, and all the other things we should not do for those we support.
It is our goal at ILC, to see people as the adults they are, and to support them in doing these things for themselves. This requires and perpetuates the respect of adulthood regardless of ability.
Drew Johnson | Director of Training and Development
Hannah Juracek | Marketing Intern
The worst thing you can do for someone with an intellectual or developmental disability is to not hold them to the same standards we hold ourselves and others.
I was at a grocery store the other day and asked for a bag of ice. The gentleman working there appeared to have a developmental or intellectual disability. Though I asked for a 20 pound bag, he brought me a 5 pound bag.
It is easy and maybe natural to wonder if this mistake was related to a disability. It is common however, for people of all abilities to make mistakes. There is also the chance that the man helping me was new to the job and poorly communicated to the gentleman the weight of ice I needed.
We are all faced with this sort of dilemma, and as technologies, supports, and attitudes improve, we will be faced with it more often. We need to consider how our behavior will impact this person’s life.
When presented with the bag of 5 pound ice, I knew I had two options. I could ignore it and pretend like a 5 pound bag was what I wanted, or I could correct the situation.
Some believe that correcting the situation is insensitive and rude because the gentleman has a disability. But ignoring the misunderstanding does not benefit anyone.
I smiled, looked at the clerk that directed the gentleman to get the bag of ice, then said, “Sorry, but I wanted the large bag of ice. I would really appreciate it if you could grab me the other bag instead.”
If I were to just take the 5 pound bag of ice, then I wouldn’t get what I came to the store for. Also, the clerk doesn’t learn how to communicate effectively and the gentleman grabbing the bag, doesn’t improve at his job.
It is much easier to say, “Can you please grab me a 20 pound bag of ice?” instead of “Can you grab me a bag of ice?”
Be direct in what you want and be courteous. There is nothing wrong with asking for what you need, but you just need to do it the right way. Regardless if the clerk or I miscommunicated, or the gentleman misunderstood, it was a simple miscommunication.
Now, more than ever, people with developmental and intellectual disabilities are working in places that we visit every day. If the person that brought back the ice had not looked like they had a disability, would you have asked for the right bag? Most people would say yes, so what is the difference? There is no difference. If this person with a disability is working and is told to get a bag of ice, then they can understand how to get the correct one.
The most disrespectful thing we can do in situations like this one is to say “forget it, I’ll get it myself.” That proves that we don’t have any expectations for him, that he can’t do the job after all, and that we don’t want him to be better at his job. At the very least, we need to hold people with intellectual and developmental disabilities to the same standards we would hold ourselves to. At most, we need to recognize that the lack of experience and supports comes from years of institutionalized neglect and questionable supports. Thinking about our interactions for a few extra seconds is the least we can do.
Would you ask for the right size bag of ice?
Communication is not about what works best, but what is right.
When we define our job in terms of results, we struggle to support the men and women who receive services at ILC in a manner they deserve. Direct support professionals are sometimes tasked with certain responsibilities that they see as their own, and to this end, will do whatever they need to to accomplish their goals. I have heard on several occasions someone justify using baby talk with an adult because that adult “responds better” to the voice. I’ve heard people use words like mommy or tummy because the person they are talking to understands those words. I have seen recommendations for restrictions or token economies in the hopes of getting someone to do or stop doing a target behavior.
We need to be careful that we do not get too wrapped up in what “works” or what is “effective”. That is the kind of thinking that leads to threats or bribes. I have heard Dr. Tom Pomeranz, on several occasions say that “we need to behave the right way, even if the people around us don’t.” We need to give the men and women we support every opportunity to respond correctly to our appropriate behavior.
By treating people with a consistency they expect from people outside of ILC, we give them the opportunity to make relationships with people who are not necessarily paid to be around. We give people the skills to talk to a variety of people and we help people become self-advocates. By using an inappropriate tone of voice or by engineering artificial outcomes, we rob people of these opportunities and admit that they will need us forever. The best thing we can do is help people be successful with a range of supports and interactions.
When we concern ourselves only with the outcomes, it shows a lack of creativity and effort. We must be willing to do the hard work, the real work. We must be willing to measure “results” or “success” on how well we treat someone. We will always be most successful if we give people the respect and dignity we would want for ourselves, and we have to trust that doing the right thing will eventually lead to the best “results”.
Director of Training and Development
Support individuals to live a fulfilling life.
Everyone who has worked with people with intellectual and developmental disabilities for any length of time will have endured a constant onslaught of “you must be so patient” or “you must be a very special person…” Some of us have even started to believe it. We are not, and should not be in this field because we think we’re special or more patient than everyone else. It also sends the message that the people that we work with annoy and constantly test nerves. The people who do believe this have chosen to stay in the field because their identity and self-worth is wrapped-up in being that caring, patient, loving person.
Caring about a person is not enough, and often gets in the way of that person’s success. Caring makes it hard to watch someone struggle to get dressed, put a plate in a sink, or attempt to get a bite of food in her/his mouth. The caring person must stop this torture to prove they do in fact care. The caring person shoves spoonfuls of food into their victim’s mouth. The caring person takes the plate, puts it in the sink and washes it. The caring person also sees it as his/her job to decide adequate portions. The caring person needs to continue this relationship in order to be needed. If the person supported was to become independent, the self-worth of the caring person would fall apart and their identity would be shattered.
What is needed in this field (DD services) and others is the support professional. A support professional is someone who is not only interested in the food getting to the person supported or the plate getting into the sink, but in helping people develop the skills so the care-taker is not needed. We should all strive to be as insignificant to the people we support as possible. We should not be their friends, cooks, maids, chauffeurs, etc… We should support people to make their own friends, cook their own meals, hire their own maids, etc…
At ILC, a large portion of our training focuses on changing the caring mindset and focusing on what is actually needed to help those in services be successful, and hopefully not need us anymore. The best, most ethical thing we can do, is not be needed longer than necessary.