Imagine that you are unable to verbally communicate very well. You might have an intellectual disability, autism, cerebral palsy, or be hearing-impaired.
When others start to talk, they don't include you in the conversation. Sometimes that conversation is about you and they still don't include you. It is as if you are not there. Invisible.
Often, this conversation about you, in front of you, and yet not including you, and occurs on your time. That is, the time that people are being paid to support you.
What must it feel like to be invisible? To be expected to stand quietly and not interrupt while the seemingly important people are having a conversation? Worse, what must it be like to be so insignificant that people talk about personal things and gossip that they wouldn't say in front of anybody but would say in front of you? As if you are not even there.
Starting today, bring an awareness to what you are talking about in front of others. Include everyone in your conversations. Bring that person who is standing next to you into the conversation by saying their name and asking their opinion. They understand what you are talking about even if they have a difficult time communicating that. And if that person needs assistance or attention, stop your conversation, not their interruption. If you find yourself unable to comfortably include everyone in your conversation, maybe you should not be talking about it. Increase the quality of what you talk about.
Monday, April 30, 2012
Sunday, April 29, 2012
Have You Thanked Your Van Driver Today?
The other day when it was raining, my daughter's van driver got out of the van with his umbrella and they walked arm-in-arm from garage to van. S doesn't need the physical assistance but really likes it because she is scared to walk on shiny surfaces, thinking they are slippery and that she might fall. S left for her day with a broad smile because U put the royal charm on for her. It made my whole day that S was happy and to know that she was in capable hands.
It's been a few days now and I still haven't thanked U for all he does for S day-after-day. I haven't recognized him in any way. I haven't told him how much I appreciate him and all the positive attention he gives S. And I haven't told his supervisor, either.
As an adult with intellectual disabilities, S has an incredible number of people who support her daily.
The transportation dispatcher organizes the van schedule and cheerfully accepts and accommodates our last-minute changes.
Her morning driver, U, has a smile on his face every morning and greets us as if he enjoys seeing us. He tries to get S to kiss or hug me or say goodbye to me (she usually won't) and he does it with great humor.
The program managers at her day habilitation site keep me informed regularly - often daily - as to whether she is happy, having a good day, having a bad day. Their greatest gift, among their many, is that they do text or call or email me to let me know she is having a good day and what she is doing. Who goes to the effort to do that? Providers are generally good about calling about the concerns but often forget to call about the good stuff.
Her direct support staff seem to like her and are able to maximize her capabilities. They help her through tough emotional days with dignity and they encourage her to start fresh the next day. They provide her with choices of fun activities and opportunities for social interactions. They let her help others and she wakes up feeling needed everyday.
S has a service coordinator who helps her find services based on what S wants. She has a family who she hangs with after day program until I can come to get her after work. They include her in their activities and treat her like everyone else. She has an afternoon van driver who has spent many hours helping S through difficult afternoons. She has a respite home she goes to for vacation days and they are extraordinarily supportive of her needs and preferences.
I could go on. But the point is, I have appreciation daily for all the people who are in S's life and are consistent, positive forces, yet I rarely thank them or tell them why I do appreciate them. I'm thinking that I am not the only one.
It's been a few days now and I still haven't thanked U for all he does for S day-after-day. I haven't recognized him in any way. I haven't told him how much I appreciate him and all the positive attention he gives S. And I haven't told his supervisor, either.
As an adult with intellectual disabilities, S has an incredible number of people who support her daily.
The transportation dispatcher organizes the van schedule and cheerfully accepts and accommodates our last-minute changes.
Her morning driver, U, has a smile on his face every morning and greets us as if he enjoys seeing us. He tries to get S to kiss or hug me or say goodbye to me (she usually won't) and he does it with great humor.
The program managers at her day habilitation site keep me informed regularly - often daily - as to whether she is happy, having a good day, having a bad day. Their greatest gift, among their many, is that they do text or call or email me to let me know she is having a good day and what she is doing. Who goes to the effort to do that? Providers are generally good about calling about the concerns but often forget to call about the good stuff.
Her direct support staff seem to like her and are able to maximize her capabilities. They help her through tough emotional days with dignity and they encourage her to start fresh the next day. They provide her with choices of fun activities and opportunities for social interactions. They let her help others and she wakes up feeling needed everyday.
S has a service coordinator who helps her find services based on what S wants. She has a family who she hangs with after day program until I can come to get her after work. They include her in their activities and treat her like everyone else. She has an afternoon van driver who has spent many hours helping S through difficult afternoons. She has a respite home she goes to for vacation days and they are extraordinarily supportive of her needs and preferences.
I could go on. But the point is, I have appreciation daily for all the people who are in S's life and are consistent, positive forces, yet I rarely thank them or tell them why I do appreciate them. I'm thinking that I am not the only one.
Saturday, April 28, 2012
Willie Wonka and the R-Word
As I sat watching the newer version of Willie Wonka and the Chocolate Factory with my daughter, I heard the r-word. One of the child characters in the movie said it, making a negative comparison. S is sensitive to the use of the r-word and usually shrinks a little from it. I know it is hurtful to her. She quickly moves on and does not want to talk about it.
Why, as a society, would we think it is acceptable to say something that we know hurts others? Even worse, the people who are hurt, are innocent. They haven't done anything wrong.
There is nothing inherently wrong with the r-word. Words are only what we make of them. But our society has made that word negative over time and has made people with intellectual disabilities feel stigmatized, simply for who they are.
There are some who argue that we should be able to use the r-word and that we should start to use it more so that it shows that people with intellectual disabilities are fully accepted and that it is ok to have a disability. It would be great if the use of the r-word held no negative connotations and that having a disability was considered part of the normal human condition.
As a society, we are not there, yet. And even after all of our protests, campaigns, and public-service announcements, the r-word is still used in a negative way every day openly and publicly.
Here's what we can do:
1. Stop the person immediately. You do not have to be rude. You just have to make them aware that what they said is not acceptable. Don't just laugh uncomfortably. Don't not say anything as that implies your consent. Don't let people Twitter it without saying something.
2. Write a letter. Every time you hear the r-word used in a derogatory manner on television, radio, in music lyrics, or in a movie, write whomever you think is responsible for it. Every time you read an article on the web that uses that word, write them a concise, quick note as to why they should not. It will only take you a few minutes. Often less, if you write it as a comment on their website. Write a letter of protest every single time.
3. Don't use the word, ever.
Why, as a society, would we think it is acceptable to say something that we know hurts others? Even worse, the people who are hurt, are innocent. They haven't done anything wrong.
There is nothing inherently wrong with the r-word. Words are only what we make of them. But our society has made that word negative over time and has made people with intellectual disabilities feel stigmatized, simply for who they are.
There are some who argue that we should be able to use the r-word and that we should start to use it more so that it shows that people with intellectual disabilities are fully accepted and that it is ok to have a disability. It would be great if the use of the r-word held no negative connotations and that having a disability was considered part of the normal human condition.
As a society, we are not there, yet. And even after all of our protests, campaigns, and public-service announcements, the r-word is still used in a negative way every day openly and publicly.
Here's what we can do:
1. Stop the person immediately. You do not have to be rude. You just have to make them aware that what they said is not acceptable. Don't just laugh uncomfortably. Don't not say anything as that implies your consent. Don't let people Twitter it without saying something.
2. Write a letter. Every time you hear the r-word used in a derogatory manner on television, radio, in music lyrics, or in a movie, write whomever you think is responsible for it. Every time you read an article on the web that uses that word, write them a concise, quick note as to why they should not. It will only take you a few minutes. Often less, if you write it as a comment on their website. Write a letter of protest every single time.
3. Don't use the word, ever.
Friday, April 27, 2012
The Power of Validation
Everyone loses emotional control. When people around us lose control they might raise their voice, yell, cry, or vent. Often our natural response to them is to tell them things that are not helpful to them or us.
Whether the person is an individual with disabilities, our partner, our child, or our fellow staff member, validation is often the most effective way to reach them and help them to calm.
Let's say someone is angry and yelling because they wanted more dinner to eat but it is all gone. As their support staff who have just helped them make this delicious meal, you become frustrated and say something unhelpful such as, "You had enough to eat. No one else is complaining. Be happy with what you got. "
But let's imagine that you take a deep breath and then sincerely validate them. "You must be so disappointed that there is no more dinner. I am sad and wish there were more, too."
You are not judging them for how they feel. You are not approving of the behavior that accompanies the emotion. What you are doing is making a connection and making them feel heard. Instead of telling them that they should be more grateful for having a nice meal, if you validate them, they realize that another human feels similarly and perhaps it eases their emotional distress a bit.
How To Validate:
1. Don't let yourself be negatively effected by an emotional outburst. Tell yourself to remain calm. (Best not to do this aloud).
2. Think about how you might feel in the same situation if you were them. Trust that what they are feeling is true for them.
3. Label their emotion for them. "It must be so frustrating to ________." Or: " I can see you are really angry about this."
4. Make a connection with them by including how you might feel in the same situation. " I would feel frustrated, too."
5. Help them to problem-solve: "What do you think you can you do to feel better?"
Event: Staff complains that they have to work a double shift when they wanted to go out with friends.
What they say: " I am always stuck doing doubles on the weekend."
What you want to say: "Stop complaining. At least you get to make extra money."
Validate instead: "You must be so disappointed you can't go out this weekend. I'd be bummed. Did you make any plans for the next weekend?"
Event: Spouse comes home complaining about their boss.
What they say: "I hate my job and no one can possibly understand the stress I am under."
What you want to say: "Well maybe your boss doesn't really mean to make your life miserable. Maybe you misunderstood her."
Validate instead: "You work so hard and it must make you so angry to be treated like that." I don't know if I would handle it as well as you do day after day. Is there anything I can do to help you feel better?"
Event: A favorite recreation activity has been cancelled for a person who lives in a group home.
What they say: " I hate you all. The rec outings are always cancelled."
What you want to say: "You always get to go out. This is no big deal. Stop over-reacting."
Validate instead: "I can see you are angry." I was hoping to get out, too. I love going bowling with you and I'm really upset. Do you think we can find something else fun to do tonight?"
Like other skills, validation takes practice. Practice it until it becomes a routine response for helping people through difficult, emotional moments. Use it with the sincerity of really wanting to be helpful to another person.
Whether the person is an individual with disabilities, our partner, our child, or our fellow staff member, validation is often the most effective way to reach them and help them to calm.
Let's say someone is angry and yelling because they wanted more dinner to eat but it is all gone. As their support staff who have just helped them make this delicious meal, you become frustrated and say something unhelpful such as, "You had enough to eat. No one else is complaining. Be happy with what you got. "
But let's imagine that you take a deep breath and then sincerely validate them. "You must be so disappointed that there is no more dinner. I am sad and wish there were more, too."
You are not judging them for how they feel. You are not approving of the behavior that accompanies the emotion. What you are doing is making a connection and making them feel heard. Instead of telling them that they should be more grateful for having a nice meal, if you validate them, they realize that another human feels similarly and perhaps it eases their emotional distress a bit.
How To Validate:
1. Don't let yourself be negatively effected by an emotional outburst. Tell yourself to remain calm. (Best not to do this aloud).
2. Think about how you might feel in the same situation if you were them. Trust that what they are feeling is true for them.
3. Label their emotion for them. "It must be so frustrating to ________." Or: " I can see you are really angry about this."
4. Make a connection with them by including how you might feel in the same situation. " I would feel frustrated, too."
5. Help them to problem-solve: "What do you think you can you do to feel better?"
Event: Staff complains that they have to work a double shift when they wanted to go out with friends.
What they say: " I am always stuck doing doubles on the weekend."
What you want to say: "Stop complaining. At least you get to make extra money."
Validate instead: "You must be so disappointed you can't go out this weekend. I'd be bummed. Did you make any plans for the next weekend?"
Event: Spouse comes home complaining about their boss.
What they say: "I hate my job and no one can possibly understand the stress I am under."
What you want to say: "Well maybe your boss doesn't really mean to make your life miserable. Maybe you misunderstood her."
Validate instead: "You work so hard and it must make you so angry to be treated like that." I don't know if I would handle it as well as you do day after day. Is there anything I can do to help you feel better?"
Event: A favorite recreation activity has been cancelled for a person who lives in a group home.
What they say: " I hate you all. The rec outings are always cancelled."
What you want to say: "You always get to go out. This is no big deal. Stop over-reacting."
Validate instead: "I can see you are angry." I was hoping to get out, too. I love going bowling with you and I'm really upset. Do you think we can find something else fun to do tonight?"
Like other skills, validation takes practice. Practice it until it becomes a routine response for helping people through difficult, emotional moments. Use it with the sincerity of really wanting to be helpful to another person.
Thursday, April 26, 2012
Just Say No... To Coloring (Unless You're a Kid)
Sometimes my daughter, S, brings home coloring pages she did at day program. She's 29 years old. I know that she likes to do them and is disappointed if I don't give her positive feedback for them. I also receive gifts of pages colored with crayons from some of my friends with intellectual disabilities. They are proud of their accomplishments and I thank them for thinking of me when they give it to me.
People can do whatever they want with their leisure time. Coloring is probably relaxing, enjoyable, and affordable. And you don't need to make a person feel badly if this is what they have indicated they prefer to do. Just think about why an adult is coloring. Is it because nothing else has been offered? Is it because coloring is what has been taught to them and they have been rewarded for doing it?
Visualize the typical 55-year old coloring in a coloring book, your grandfather, perhaps. If you automatically offer coloring to a person with intellectual disabilities, it is possible you are infantilizing them. It is also an isolating event that does not encourage social interactions.
Individuals with disabilities have so many capabilities. Support them in finding their passion and building upon these capabilities.
Ideas:
1. At least wait for the person to ask to color. Don't offer it if they didn't.
2. Sketch book and coloring pencils - the art-quality kind.
3. Support them in making a connection with others.
4. Play cards - Play War.
5. Don't give coloring books and crayons as a gift to an adult with disabilities unless they asked for it.
6. Go out and see the world. There are lots of fun things to see and do that are free.
7. Bake and decorate a cupcake.
9. Visit a lovely person in a nursing home.
10. Research creative art projects and use media other than crayons.
11. Challenge yourself to help the person find adult crafts that interest them.
12. You can think of a million more ideas....
People can do whatever they want with their leisure time. Coloring is probably relaxing, enjoyable, and affordable. And you don't need to make a person feel badly if this is what they have indicated they prefer to do. Just think about why an adult is coloring. Is it because nothing else has been offered? Is it because coloring is what has been taught to them and they have been rewarded for doing it?
Visualize the typical 55-year old coloring in a coloring book, your grandfather, perhaps. If you automatically offer coloring to a person with intellectual disabilities, it is possible you are infantilizing them. It is also an isolating event that does not encourage social interactions.
Individuals with disabilities have so many capabilities. Support them in finding their passion and building upon these capabilities.
Ideas:
1. At least wait for the person to ask to color. Don't offer it if they didn't.
2. Sketch book and coloring pencils - the art-quality kind.
3. Support them in making a connection with others.
4. Play cards - Play War.
5. Don't give coloring books and crayons as a gift to an adult with disabilities unless they asked for it.
6. Go out and see the world. There are lots of fun things to see and do that are free.
7. Bake and decorate a cupcake.
9. Visit a lovely person in a nursing home.
10. Research creative art projects and use media other than crayons.
11. Challenge yourself to help the person find adult crafts that interest them.
12. You can think of a million more ideas....
Wednesday, April 25, 2012
The Golden Rule Revised
I am not going to say what you think I'm going to say.
I hear a lot of people saying that a good practice is to follow The Golden Rule when working with people with intellectual disabilities. "Do unto others" makes things easy and works every time, so we are told. Much as I hate to go against such a positive sentiment, I wonder if that is the best way to work with others.
People - including people with disabilities - are so unique. We are all so different in our individuality. To say that all people want to be treated the same does not show consideration and acceptance for our many differences.
I think people assume that everyone universally wants to be greeted with a smile, for example. It may be true that many of us like to be greeted with a smile, but not all of us do. I remember when a young woman whom I had just met firmly told me to stop smiling at her and that it was bothering her.
Does everyone really want to be treated the same? Well, we all presumably want to be treated with dignity and respect but one person's definition of dignity differs from another's.
Or how about independence? Some of us would love to be served our meals rather than cooking our own meals for ourselves. If I treated someone as I like to be treated, I would have them sit down to a beautiful vegetarian meal of my choosing. I'd serve them every bit of it and enjoy doing so. If I did that at a group home, I'd be fostering dependence and that's not what we do. In that case, I wouldn't be encouraging and supporting people to make their own choices for themselves, I wouldn't be listening to what their preferences are, I wouldn't be helping them gain skills to use, and I wouldn't be letting them acquire the pride from a job well-done.
The Golden Rule can probably be used in broad categories. As a society, we know that humans should not be exploited and that none of us want to be exploited by others. We know that humans do not want to be abused, although our definitions probably differ on what abuse is. We all want to be treated as if we are important, so TGR would apply there, perhaps. Again, it's about how we each individually define these terms.
How about this: We treat others how THEY would like to be treated, not how WE would like to be treated? So the revision is: Do Unto Others Based on How They Prefer to be Treated.
The Golden Rule can probably be used in broad categories. As a society, we know that humans should not be exploited and that none of us want to be exploited by others. We know that humans do not want to be abused, although our definitions probably differ on what abuse is. We all want to be treated as if we are important, so TGR would apply there, perhaps. Again, it's about how we each individually define these terms.
How about this: We treat others how THEY would like to be treated, not how WE would like to be treated? So the revision is: Do Unto Others Based on How They Prefer to be Treated.
Tuesday, April 24, 2012
Morning Routine Sensitivity
Here's a sensitivity exercise: picture your morning routine. It's just a small part of your everyday experience but if most of us don't do exactly what we want when we want in the morning, it sets off our whole day in a less positive way. You set your alarm and you either hit the snooze button or you get right up. Or you don't have an alarm and wake whenever you want. You maybe grab a cup of coffee made exactly the way you want. Maybe you have another cup before you get moving. Or maybe you hop right into the shower. You might read the newspaper or exercise. Maybe you do chores before you head out for work.
Here's my routine, for example: 1) Alarm goes off at 4:50 so I have 10 minutes to wake gently. 2) Get out of bed at 5am. 3) Yoga poses while I wait for tea to steep. 4) Drink black chai tea with almond milk and stevia while reading or writing in journal. 5) Go for a walk if weather is nice. 8) 6:50am shower. Wash all body parts in the same order. (How much do we take that for granted?) 9) Make breakfast, same thing everyday - a smoothie. 10) Dress.
All right. So what happens if anything is out of order? Or what happens if I don't get to read or relax and drink my tea? At the very least, I am set off and my day doesn't feel quite right for a while. On a different day, this might ruin my whole day.
Now I'll pick one of my acquaintances who happens to have an intellectual disability and lives in a group home. Here's her morning routine: 1) Staff wake her up, different time everyday. 2) A new staff asks her to get in the shower but she usually gets her medications first and now she is confused and something doesn't feel right to her. 3) Staff help her to shower but ask her to wash her hair first and she usually does that last, again setting her off-kilter a bit. 4) Breakfast involves her getting her own things ready but this new staff helps her by getting some of her things, setting her off a little more but she doesn't have a way to verbalize this. 6) She likes to have a cup of coffee while she waits for her van to come pick her up for work but staff didn't know this and she didn't get a cup of coffee this morning.
The end of the story is that she doesn't have a good day at work, is not able to tell anyone why, and doesn't know the sign for coffee so can't express what she needs to make her day go better.
Here's my routine, for example: 1) Alarm goes off at 4:50 so I have 10 minutes to wake gently. 2) Get out of bed at 5am. 3) Yoga poses while I wait for tea to steep. 4) Drink black chai tea with almond milk and stevia while reading or writing in journal. 5) Go for a walk if weather is nice. 8) 6:50am shower. Wash all body parts in the same order. (How much do we take that for granted?) 9) Make breakfast, same thing everyday - a smoothie. 10) Dress.
All right. So what happens if anything is out of order? Or what happens if I don't get to read or relax and drink my tea? At the very least, I am set off and my day doesn't feel quite right for a while. On a different day, this might ruin my whole day.
Now I'll pick one of my acquaintances who happens to have an intellectual disability and lives in a group home. Here's her morning routine: 1) Staff wake her up, different time everyday. 2) A new staff asks her to get in the shower but she usually gets her medications first and now she is confused and something doesn't feel right to her. 3) Staff help her to shower but ask her to wash her hair first and she usually does that last, again setting her off-kilter a bit. 4) Breakfast involves her getting her own things ready but this new staff helps her by getting some of her things, setting her off a little more but she doesn't have a way to verbalize this. 6) She likes to have a cup of coffee while she waits for her van to come pick her up for work but staff didn't know this and she didn't get a cup of coffee this morning.
The end of the story is that she doesn't have a good day at work, is not able to tell anyone why, and doesn't know the sign for coffee so can't express what she needs to make her day go better.
Monday, April 23, 2012
Equality For All
I have asked others if they thought that everyone was born equal. Most often they answer, "yes." Perhaps it is politically correct to answer that way. By my own observations, I have seen that this is not the case. Some people are born more intelligent. Some have more opportunities. Some have more financial support. Some are born with significant health issues. We might not be born equal but we all are equal in human worth. Yet we don't treat each other as if equal in human worth. If the person with the fancier clothes gets attention faster than the person in old, torn clothes, we are not treating them equally. Each time I go to the checkout at the grocery store with a person with a disability, if the cashier only talks to me, they are not treating us as if equal in human worth. The trouble with this is that the individual with the disability actually notices that they are not being treated equally. They know they are treated differently but very often cannot express that it bothers them.
How do we start treating others as equal humans?
1. Raised Awareness. We have to think of the instances in which we do not treat everyone in a similar manner to everyone else in society. An example is in greetings. Do you greet others differently based on how you perceive them? Do you use a sing-song tone with some and not others? Do you pat someone with an intellectual disability on the head yet you would never do that to another adult?
2. Practice Respect. Make a conscious effort to think of everyone in the world as having dignity and worth. Then practice it in your interactions with others and your comments about others.
3. Overcome Your Fear. Many people in society are fearful of what they don't know. Get to know people with disabilities just as you would anyone else. Just talk with them. If in doubt at first, take your cue from their support person.
4. Don't Ignore Them. Don't treat a person with a disability as if they are not there by talking exclusively with their support person.
How do we start treating others as equal humans?
1. Raised Awareness. We have to think of the instances in which we do not treat everyone in a similar manner to everyone else in society. An example is in greetings. Do you greet others differently based on how you perceive them? Do you use a sing-song tone with some and not others? Do you pat someone with an intellectual disability on the head yet you would never do that to another adult?
2. Practice Respect. Make a conscious effort to think of everyone in the world as having dignity and worth. Then practice it in your interactions with others and your comments about others.
3. Overcome Your Fear. Many people in society are fearful of what they don't know. Get to know people with disabilities just as you would anyone else. Just talk with them. If in doubt at first, take your cue from their support person.
4. Don't Ignore Them. Don't treat a person with a disability as if they are not there by talking exclusively with their support person.
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