Build a dream and the dream will build you. R. Schuller.
What is Normalization?
In 1981 when Aaron was 6 years old, my friend Debbie Wetzel and I drove to Louisville, KY to hear Wolf Wolfensberger give a presentation on “Normalization” or “Social Role Valorization” as he renamed it.
Like many parents before us, this philosophy changed our whole way of looking at our children and their futures.
As Debbie said about her daughter, “Jenni is not going to lead her life wrapped up in cotton and stuck on a shelf. She is going to have as normal a life as possible.”
On the ride home we also talked about what this new way of thinking was going to mean for us as mothers and advocates. We knew our lives were forever changed. The segregated services that were currently our only options were no longer acceptable. We would no longer allow our young children to get on segregated busses taking them an hour-and-a-half across town to segregated schools and handicap-only recreation programs.
When I got home I outlined the following plans that were ambitious and I knew (based on what we were currently fighting with our school district) maybe impossible to achieve.
The dream plans were based on what I had just learned about normalization and compared my dreams for Aaron, age 6, my son with the label of autism and developmental disabilities and Tommy, age 4, with the label of typicalness.
The concept of building community and normalized environments set the course of my life.
In part 2 and 3, I will be showing you how this 1981 dream evolved. Remember the language is from 1981 when we talked with words like retarded and group homes. This will evolve too.
1981 Dream Plan for Aaron
Aaron will be educated in a public school with his non-handicapped brother and neighbors. He will have a functional curriculum (see related post) which looks at his needs in his life spaces (vocational, leisure/recreation, domestic, general community functioning). His out-of-school activities will evolve around his family and his own friends, interests and talents. He will be in age-appropriate settings: elementary school ages 5-10; Jr. High ages 11-13, Sr. High ages 14-21, job in the community 21+. He will begin vocational training now, at age 6, so he will be able to perform the job. (If he isn’t able to be a dishwasher, then he can be a dishwasher’s helper, etc… there is some job he will be able to do with success.) At the appropriate time, Aaron will move to a group home to live with others his age. Though dependent in many ways, Aaron will have self-esteem and confidence in the things he does and be a contributor to his family, his extended family, and society.
1981 Dream Plan for Tommy
Tommy will be educated in a public school with his handicapped brother and neighbors. He will have a functional curriculum which looks at the needs in his life spaces, (academic, vocational, leisure/recreation, domestic, general community functioning). His out-of-school activities will evolve around his family, his own friends, interests, and talents. He will be in age-appropriate settings. He will make a career choice and pursue training (vocational, university, apprentice…). At a time he decides is appropriate, Tommy will move to his own home, probably marry and begin his own family. He will have self-esteem and confidence in the things he does and be a contributor to his family, his extended family and society.
The principle of Normalization originated in Scandinavia by Bank-Mikkelsen who began to compare his own life with the lives of residents in institutions for people who were then called “idiots, morons and imbeciles.” (Today we would say they have “intellectual disabilities” see related post on Rosa’s Law.)
Bengt Nirje a leader in the Swedish parent movement expressed it best:
a normal rhythm of the day.
You get out of bed in the morning, even if you are profoundly retarded and physically handicapped;
You get dressed and leave the house for school or work, you don’t stay home;
In the morning you anticipate events, in the evening you think back on what you have accomplished;
The day is not a monotonous 24 hours with every minute endless.
You eat at normal times of the day and in a normal fashion;
Not just with a spoon, unless you are an infant;
Not in bed, but at a table;
Not early in the afternoon for the convenience of the staff.
a normal rhythm of the week.
You live in one place, go to work in another, and participate in leisure activities in yet another.
You anticipate leisure activities on weekends, and look foward to getting back to school or work on Monday.
a normal rhythm of the year.
A vacation to break the routine of the year.
Seasonal changes bring with them a variety of types of food, work, cultural events, sports, leisure activities.
Just think…we thrive on these seasonal changes.
normal developmental experiences of the life cycle.
In childhood children, but not adults, go to summer camps.
In adolescence, one is intersted in grooming, hairstyles, music, boyfriends and girlfriends.
In adulthood, life is filled with work and responsibilities.
In old age, one has memories to look back on, and can enjoy the wisdom of experience.
having a range of choices, wishes, desires respected and considered.
Adults have the freedom to decide where they would like to live, what kind of job they would like to have and can best perform.
Whether they would prefer to go bowling with a group, instead of staying home to watch television.
living in a world made of two sexes.
Children and adults both develop relationships with members of the opporite sex.
Teenagers become interested in having boyfriends and girlfriends.
And adults may fall in love, and decide to marry.
the right to normal economic standards.
All of us have basic financial privileges and responsibilities;
Are able to take advantage of compensatory economic security means, such as child allowances, old age pensions, and minimum wage regulations.
We should have money to decide how to spend, on personal luxuries or necessities.
living in normal housing in a normal neighborhood.
Not in a large facility with 20, 50, or 100 other people because you are retarded;
And not isolated from the rest of the community.
Normal locations and normal size homes will give residents better opportunities for successful integation with their communities.
W. Wolfensberger; B. Nirje; S. Olshansky; R. Perske; and P. Roos, The Principle of Normalization in Human Services (Toronto: National Institute on Mental Retardation, 1972).
Recently Anne McDonald died, her story Annie Coming Out told of what it was like to live in an institution–not normal environments–where you were only seen as a group, never an individual (see related story).
If you are interested in more information about the history of people with disabilities, institutional settings and/or the parent movement check out Parallels in Time I (click here) and II (click here.)
Have you ever gone to a lecture or workshop and come out a different person? Do you agree with the principle of normalization? Can a person with and without a disability both lead normal lives?
Keep Climbing: Onward and Upward
All my best,
Very inspiring article. Everybody deserves to live a regular life regardless of a disability. My brother with Down syndrome has gone through the Columbus Public School system at a normal elementary school and is very successful. He also competes in sports both for the Special Olympics and leagues not specified for the handicapped or disabled. It’s great to see him excel in things when others would doubt his capabilities.
Wow! Andrew that is a true success story. I’ll bet your family was a huge part of his success. You should all be proud because not only did you do a great job for your brother, but you taught every student, parent, teacher and community member that it could be done. Bravo!
I really enjoyed reading about how hard you worked to make your son feel like he has a life just like everyone else. I think it is so awesome that you are working so hard to make a difference not only for your son, but for others who have nobody to fight for them to have a “normal” life. I think that it is so awesome how you planned out how you would make it so Aaron would have a life that seems like everyone else’s.
Beth, When you are a teacher and parent, you will be fighting for children too. It’s just something you have to do. I hope you will have the confidence and skills to help us all move forward, one child at a time.
I loved reading this. I love how devoted you were to make sure your sons life could be as normal as possible. I completely agree with not allowing your son to be forced to ride a different bus and go to a different school just because he has a handicap. They should have the ability to educate students with a handicap also.
Thanks Amanda. Listen to the audio about “when the school says “no” to Inclusion”– I think you will learn how this isn’t just an issue from the 70s, but from 2013.
I quote “systems’ theory” a lot–but it helped me make sense of how we each make sense of the world. And “normalization” made all the difference for us.
This article was really inspiring to read. I love hearing about a parent doing anything for the kids and making the they have the best they possibly can have.
Glad you liked it Erin.
i love reading this article with you talking about how much you love Aaron and would do anything for him. Its so cool that your dreams for both your boys are so similar to each other because you do not see them any different from each other which I think so so amazing. It would be so nice is everyone felt that way. This really shows how much you love your sons and want the best form them especially Aaron despite his disability.
Thanks Emily. I think every parent want the same things, they may not just know it is called “normalization”
I loved reading this article because it was so inspiring. I love that as a parent, you will do anything to help your child live as normally as possible. Reading the plans for both children, they are similar, which allows me to infer that you want the same life for both of your children and you want Aaron to be able to live like Tommy. I don’t think that there should be separate institutions for those with disabilities. They have the same rights as anyone else and they have the same potential as any other student, they just require more patience. I love this story and how you fought for your child’s rights.
Thanks Kendall, their lives really are the same when you get to the bottom line. Kind of like Glen said in the powerpoint–“he just needs more support”
I really enjoyed reading about Aaron and Tommy and normalization. The dream plans were very touching especially because of their similarities. I never even thought about normalization until today. I sort of feel bad because I feel like I have taken normalization for granted my whole life. The post about “Normalization means…” really opened my eyes. Everyone deserves normalization and Aaron’s dream plan was perfectly normalized, with a few accommodations of course, just like any other person’s dream plan would be. Anyone and everyone is capable of living a normalized life, it is just a matter of who out there is willing enough to assist those is need of help to acquire normalization.
Hi Leah, Glad it helped you understand “normalization”–it’s such a basic concept. We love our child the way they are–we just want them to have a happy and fulfilled life.
I really love reading the article of Aaron and his brother Tommy. It is truly an amazing story of two brothers and a mothers dedication to get a well deserved education for her son in a challenging time in America. Normalization is something we all take for granted but is deserved by everyone regardless of a disability or not. Aaron is very lucky to have you as his mother to make sure that he received the education he deserved. With your help you and Aaron made it easier for children to receive the help they need and to keep the dream alive and to share your experience with others.
I need to talk more about Aaron’s dad. He’s a pretty important reason Aaron and Tommy both had a good life. I’m really lucky. 🙂
I really enjoyed reading this article because every parent is going to fight for their child to be able to have the same rights as any other child and I think it was just awesome what you did for Aaron. It shows that you really want Aaron to experience the same things as other children and I admire that.
Thanks Katie. Aaron has so much potential. I want others to see his beauty. It was easier when he was younger–people love babies and young children. But we keep trying. 🙂
I really enjoyed reading this article. I think having a dream plan for Aaron was a wonderful idea because it is giving him goals as a child to reach for the moon. Even if he misses some he will land among a star. Aaron has proved that he will keep reaching and achieving to live that “normal” life that every boy deserves. I loved all of the normalization is.. because every child, every adult, every human deserves to feel normal and to be accepted for who they are. No one is “normal” just like no one is “perfect”. Everyone is unique and everyone should have equal opportunities to succeed and to prove that they are special in their own way. Go Aaron, and keep proving everyone that anyone can be normal!
Thanks for the vote of confidence Britt. You’re right, we all want to be “normal” and yet none of us is really normal or perfect.
I really enjoyed reading this article because it brought me joy nothing is going to hold Aaron back from doing what he really wants to do. Just because he has a disability doesn’t mean his dreams should differ from those who don’t. I love the fact he plans to attend a normal school with his brother and friends. He will get so much support through those people and his family which can only help his current situation. Just because things may be a little harder for Aaron to accomplish doesn’t mean it cant be done! I do think normalization exists, but it is what you make it, not a set plan.
You are right Lacy. The specifics of “Normal” for me is different than normal for you or normal for the person down the block. But “normal” in our culture (the big system) means certain things. And, the institutions of the past were NOT “normal” in any way.
Aaron’s accomplishments are evidence that “If there is a will, there is a way.” With the outstanding support of his family and his own determination, Aaron has proven that people with disabilities are valuable and constructive members of society. I think it is important to recognize that the 1981 Dream Plan revolves around who Aaron is, not his disability. The dream plan represents Bengt Nirje’s definition of normalization because the goals are not specific to people with disabilities; The fact that Tommy’s dream plan is almost exactly the same as Aaron’s dream plan proves that both people with and without disabilities can adopt the dream plan and become a contributing member of society. I appreciate that the dream plan is not too specific because it provided the opportunity for individualization. I loved seeing the specific goals that were added to Dream Plan (part 2) because it gave a sense of the well-rounded, ambitious, strong individual Aaron was growing into. It was especially interesting to read the about the Dream Plans and your attitude toward Autism after watching the video of Aaron at Lakota High School and hearing your stories about him in class. I felt as if they gave me a behind-the-scenes look at your journey, which helped me better understand people with disabilities and their families.
I always wonder if my writing is clear enough to make the story real. You made me feel pretty good Amna. We are so proud of Aaron. He’s the one who proved he could make this dream happen. I hope you get a chance to read the next couple dream plans. It is a work in progress.
I think what you did for your soon Aaron is great. You let Aaron be a normal kid and have the same treatment as every other kid, which is awesome. I also really liked how when I was reading both the future plans they were almost the exact same between both sons. There was only variation between them which is so cool because again you want Aaron to have a normal life just like his brother would have. Again I think what you did to make Aaron life normal is amazing.
thanks Paige, but the journey continues. Today Aaron’s day program was cancelled because of the cold. I wonder if he will be sitting on his couch all day chewing books, or will the staff person take him to walk at the mall or go to the store or do ANYTHING–to break up the day. Loneliness is the biggest problem for people with disabilities. It is a journey indeed.
Watch the videos in the next module.
Commenting for module 3:
I love the way that you look at the future your son will have. He is going to live a very fulfilled life even though it is not seen as normal. The way you have advocated for your son, and still do, and others with disabilities amazes me. And after reading all the definitions of normalization it really does prove that Aaron will be living a life that can be seen as normal.
Thanks Christina. All I can say is we try and then we try some more and then some more.
I hope you will read the other Dream Plans for Aaron–there is a #4 that lists them. I think you will see growth.
Gosh Megan, all these compliments. Parenting any child takes much love and dedication. Parenting and trying to change the world is just a little more difficult. (Does that sound like the slogan of the Marines?)
“Aaron will be educated in a public school with his non-handicapped brother and neighbors.” This was an awesome plan. I think this is really important in order for that child to grow and develop. It’s really awesome that you’ve made a difference, not only in your son’s life, but the lives of other disabled children as well.
This article was very inspiring to me. It’s great to know that we have people that are willing to stand up for children and adults with disabilities, especially if they are unable to stand up for themselves. I do believe that they should involve special education in regular schools. Students need to be involved with other students that are different from them. Seeing things from another persons point of view is crucial when in a learning environment. Being separated does not help anyone. Growing up I had a speech problem, where I could not pronounce my R’s. Once a week I would be pulled out of the classroom to a different one that had other students with speech problems. Every time I was called out of the classroom, the other students would look at me. They would also ask questions about where I was going and why I had to go to a speech class. Even though I was only pulled out of the classroom once a week it was still enough to make me feel different and separated from everyone else. Inclusion is important and making those students not feel any different from their peers should be a priority.
I love that you were able to relate this to your personal experience. If you are comfortable share this in class. The practice of your “r’s” could easily be done in a less restrictive setting with no embarrassment. But, we didn’t know any better and hopefully we have learned the lessons of segregation. Maybe you will be able to have an influence on another child’s life and spread the word.
When you the term “civil rights” you think its mostly equal every different race is equal in society here in America and both sexes are equal, but you don’t automatically think that we still are treating people very wrong. And it just disgusts me that in America, land of the free and home of the brave, that we are not all free to choose what we want to be and what we want to do with our lives. It just is an eye opener, this movement may not be on the front page of the paper but it still exists and we are getting closer to truly equal rights to ALL we are just not there yet.
You’re right Randy, it is all about civil rights and not having to beg for what we need.
I think that it is amazing that you had such high goals and dream plans for each of your children! I also think that it is amazing that the presentation you went to evoked you to take action and stand up for Aaron. Especially when you knew the action that you were going to take was not popular and borderline impossible. I believe that normalization is achievable to a certain extent. I feel that some of the “rules” in the green box above are somewhat absurd though. Honestly, who cares if someone only eats with a spoon? Furthermore, whose business is it anyway? I think that it is important: to treat children with disabilities with respect, place them in the least restrictive environment so that they can thrive, make sure they are happy and healthy, and establish that it is unacceptable for them to be discriminated against. I think that every life is a special case and no set of rules applies to everyone…disabled or not. Because of your class and your blog, my eyes have been opened concerning people with disabilities. I am excited to learn more!
Alexa, you are really good for my confidence. Thanks for your kind words. I love your phrase “borderline impossible” that about says it all, it’s certainly how it felt then and in some things NOW. 🙂
Now, about the “spoon.” I’m so glad you brought this up. There is always more to the story that isn’t said. For instance, in many of the institutions, because the “inmates” were only thought to be able to use a spoon, they prepared foods that could only be eaten with a spoon. So, mush and soup and oatmeal and mush and soup….
The staff were worried “inmates” might choke if they got real food. Remind me to tell you about Orient (Ohio’s institution and the day the Arc visited). Plus, mushed food was cheaper and they had such poor funding and little kitchen help to prepare the food. Plus, they thought maybe they would hurt themselves with the forks or knives–and because the “inmates” seldom used forks or (heaven help us) knives, they might. Plus, in cleanup–it was easier to just have all spoons (they didn’t have to sort utensils for cleaning or serving–just throw them all in a basket). See what I mean. The spoons were part of a much bigger picture and usually it was all about what was easiest for the staff.
Nothing is ever simple, is it? Hope this helps. 🙂
I think that normalization is something that more people should be aware of. I know that when I don’t do anything exciting and just stay home all day (like when I have the flu or something) and don’t go to a separate place for work/school, recreation/pleasure, and then return home I feel bored and restless, almost trapped. I think anyone can relate to that, because there is just something so inherently exciting about going out into the world and experiencing all you can; this excitement reaches everyone, regardless of age/gender/race/abilities/ect.
I love that you are making sense of this from a personal perspective, putting yourself in the person’s shoes. It really is everyone like you explained. Aaron wants to go out into the world, just like each of us. And though he doesn’t have words, he tells us he is upset, or bored, or restless in biting himself, tearing up books, eating… every behavior except saying it with words. If only the staff… would understand this and not take the easy way out by just sitting there talking on their phones (personal pet peeve here) 🙂
This article means a lot to me and I can easily relate to it. My 8 year old sister has Down Syndrome and she is my best friend. I love going to her soccer games, school events, and other activities because I enjoy giving her the support she deserves. Elizabeth is one of the most determined people I have ever met, and she never lets her disability become a hindrance for her. Whether she is on the soccer field, in school, or at home, I have never seen her give up. She perseveres through everything, just like any “normal” person would. That is what I believe normalization is truly about; never giving up at the things you love, or the dreams that you have.
Elizabeth is lucky to have you at her side. If you read the article about “Parents who never give up,” I’ll bet your family has many of those characteristics. Love truly conquers obstacles.
I love your definition of Normalization–“never giving up at the things you love, or the dreams that you have.”
Great article! This reading allowed me to reflect back on the way I speak to others with disabilities, especially my sister. Without realizing it, I tend to talk to my sister, who has Down’s Syndrome, with a different tone and attitude. It is not a negative tone, but almost sounding condescending. Sometimes I talk to her like she is a baby, but she is 4! Sometimes I forget she is capable of understanding everything I communicate to her, and I need not to emphasize some words or phrases as if I’m talking to a baby. I need to communicate to her as if I’m communicating with any other 4 year old. I don’t know if I’m explaining this correctly. But there are the little things that we subconsciously do or say, that may seem demeaning and not quite normal. I hope this makes sense!
This is all about normalization isn’t it?
The good news is that your sister knows you are speaking with love and so she rolls with it. The other good news is that now that you are aware, you can change. There are many people who use that whiny, high pitched voice with young children and people with disabilities–and never even know how annoying they are. So, more good news–you are ahead of the game. Win-win-win.
I loved reading this article and noticing how similar your dreams for both Aaron and Tommy were to each other, as they should be. It breaks my heart to know that some people, once learning of a person’s disability, immediately classify them as unable to participate in so many different aspects of life. There is so much potential to be had of every single person, as well as life experiences that every single person has the right to enjoy, and it’s inspiring to know that Aaron has been able to accomplish so many things and experience so much of life, thanks to you and the work of so many others.
All about Normalization. If I hadn’t gone to that Wolfensburger conference it would have taken me a longer time to understand the importance of having high expectations for each of my sons. When I wrote this, I thought it would be almost impossible to achieve the goals for Aaron–after all we were in a lawsuit to just try and get our foot into the public school. There are 3 more dream plan updates on this blog. You might find it interesting to read them as well.
Thanks Abby for your comment. It is very sincere and touches me because it gives me hope for the future because there will be people like you. 🙂
Reading these plans written a while ago just is so inspiring because you didn’t just sit back and let Aaron’s disability control his life but rather everyone took control and made a plan to how you would approach life. Although very general you mentioned not one but both of your sons and their lives with people different than themselves.
I also thought that the quote about normalization was interesting. This has definitely opened my eyes to the thought that everyone should be treated more equal. A common misconception is that individuals with exceptionalities often get more that a mediocre person but in real actuality they just want to be recognized as equal.
What’s really neat is we accomplished almost everything – though what was considered best practice changed. i.e. no one wants a 6-15 person group home any more. Thanks Kara for your comment.
If you are interested, type in Dream Plan and there are about 3 more updates for Aaron–this was just the first one.
My individuals with Exceptionalities class has really opened my eyes to how individuals with disabilities should be able to live normal lives and actually live life. However, I do think normalization is possible to a point. I have a cousin who has some form of a mental disability, but her parents didn’t accept this disability right away. They constantly were trying to convince themselves nothing was wrong and when they finally figured out that there was something wrong it was when she was in her late teens. Now she is living in a home with a few roommates who have the same disability as her, but she doesn’t know how to handle conflicts with her roommates and is really struggling. All in all, if my family members would’ve made a plan like you did with Aaron I think, my cousin would’ve been able to have all the benefits of normalization.
This is truly inspiring. I work for an organization called Angels 4 Life and I am going to implement this into my job. One of my clients is twenty-two-years old and is diagnosed with autism. I am in charge of ensuring that Tony takes part in “normal” everyday activities. Tony is just like any other adult and is capable of going through the changes talked about in this article. Yes, maybe the route in doing so maybe have to be altered, but there is always a way and thats what my goal and ambition is to do for Tony and so many others! I cannot wait to share this article !
This is an example of using the principles of Normalization and Social Role Valorization. If you use the search feature, there is actually Dream Plan 1, 2, 3, and 4.
Glad it was useful Victoria.
You can definitely see your enthusiasm in the work you write. The world hopes for more passionate writers like you who aren?¯t afraid to say how they believe. Always go after your heart.
Thanks Freddie, there are a lot of people who need our love and help. Hope you’ll add more about the good things you are doing.
This is very intresting, You are a very skilled blogger. I have joined your feed and look forward to seeking more of your great post.
Welcome Gertha, hope you’ll tell us more about yourself. If you want, you can get an email notice when I post a new article.
Good blog, where did you come up with the knowledge in this piece of content? I’m glad I found it though, ill be checking back soon to see what other articles you have.
Thanks so Much Mary. Yes she would have many stories to tell. As for how am taking it. The way I see it she has done a great job with both me and my brother Bill. I’m at a point where I can let her go to the Spirit World(heaven). I am content in that way. I just don’t know what to do with all her stuff she will leave behind. For me most of it like her clothe and portable Potty is junk for me.
Do you have a United Way? Call there and ask if some group would come out and help you sort it all out. Sometimes there are churches or other non-porfits which will help you hold a garage sale or auction.
I can’t say I have been to a lecture the like and been changed.
It is so nice to know that other mothers were trying to make a difference in the lives of their impaired chid(ren) like my own mother did. I only wish she could at least virtually get to know you. But even in her better days she was not a big technology fan.
BTW she is currently at Barlow Respiratory Hospital on their ventilator weaning program. But her recovery is very slow and other health issues keep cropping up. So I must wonder if her best days in this dimension(world) are coming to a close soon.
Oh Gary, I am glad to hear your mother might be getting off the respirator. But it sounds like she is still having a lot of problems. She has loved you and cared for you as no one else could. It must be so hard to see her struggle with her health. It would be great if she could join us, I’m sure she has many stories to tell.
Keep letting us know how she is doing. I’ll be sending good thoughts into the universe for both of you.
Aaron seems to know exactly what he’s doing in that photo.
I do admire you, Mary. You really were on the cutting edge. Innovating, changing, confronting. I was about to leave high school when all this was going on in your life. I know things aren’t perfect but because of mothers like you, things are better than they were then. And you were a very attractive young mom! 🙂
Hope it was obvious that Aaron was blowing out the candles as they were lit. It was hilarious. I was trying hard not to laugh. Tommy was having a ball. Those were good times. Tom was trying to shoot the camera shot and we were all laughing.