Valued Roles

Based on the theory of Social Role Valorization . . . . .

Devalued individuals, groups, and classes are far more likely than other members of society to be treated badly, and to be subjected to a systematic -- and possibly life-long -- pattern of such negative experiences as the following:
1. Being perceived and interpreted as "deviant", due to their negatively-valued differentness. The latter could consist of physical or functional impairments, low competence, a particular ethnic identity, certain behaviors or associations, skin color, and many others.
2. Being rejected by community, society, and even family and services.
3. Being cast into negative social roles, some of which can be severely negative, such as "subhuman", "menace", and "burden to society".
4. Being put and kept at a social or physical distance, the latter most commonly by segregation.
5. Having negative images (including language) attached to them.
6. Being the object of abuse, violence, and brutalization, and even being made dead.

I am not positively valued in society because of my developmental disabilities. Creating valued roles for me will help in protecting me from the above mentioned bad things. It will also provide the experiences for me to acquire new skills and competency.

It is important to keep in mind that it is so easy to focus on my deficits that my capacities and strengths are overlooked. Low expectations from others deny me not only of opportunities to learn and grow, but also of the possibility of living a full meaningful life. I have the capacity to learn and to contribute to my community.

I am going to have a new role at church - I will be the greeter and hand out bulletins at Sunday service. I am looking forward to the direct interactions with others, especially my peers.

Vulnerability

It is so true that . . ."People who have a disability in our society are often seen as less than and different by most others in the society. They are stereotyped in negative ways that deny their unique gifts and devalue their presence in our midst. Shunned, rejected, and set aside (even with good intentions), people lead lives that run outside of the valued core of our society. Often they live separately (as in group homes), work separately (as in workshops) or not at all, and recreate separately (as in special and separate sports programs). As a group this makes them vulnerable to further poor treatment, further setting apart, and further situations that can put their very lives at risk. Most people in society do not come to know them as unique human beings who have a contribution to make to the greater community. Instead, people easily agree to substandard lives for those faceless people who they do not know."

I am vulnerable because of our societal value. My mom protects me to ensure my safety. She asks the same question every special needs parent asks, "Who is going to be 'me' when I am no longer around." For the past decade, she worked hard in setting up a home for me. My roommates and I are blessed with loving care after my mom switched from a service provider to family managed support. My mom is not willing to settle for "good enough" and she continues to search for better.

". . . technology and the money for paid support form important parts of the whole picture for people with disabilities, but we have seen technology fail and we have seen human services fail."

We experience over and over again the limitations and frustrations of counting on services. My mom is now beginning to realize that there are better options to a service model.

"What can best protect the vulnerability of people at the edges of society is, ironically, the very thing from which they are separated - ordinary citizens.

. . . Interpersonal relationships, built on trust and commitment, seem to be the human way of making it through life in meaningful ways. . . We know this is true for ourselves. We know that it is equally true for our family members who have a disability.

. . . One of our deepest beliefs is that our sons and daughters are safer and more likely to be living good lives when they are in relationship with others in community who choose to spend their time with them. A second deep belief is that our communities are stronger and better places for us all when we learn how to welcome, accept and honour the gifts of our most vulnerable members. Our sons and daughters' presence teaches our communities to find new depths of welcome, love and understanding."

(Source: Klees, J. (2005) Our presence has roots: The ongoing story of Deohaeko Support Network. Toronto: Webcom Limited)

Societal Value

My mom has already attended 8 workshops/conferences this year. Most of them were whole day workshops. Some of them were 2 days long. She is going to be well educated in how to take care of me. She has also been reading a lot. The following is an excerpt from a book she is currently reading:

"We live in a world . . .

. . . where society values one set of human attributes (youth, health, conventional beauty, money, productivity, speed, intellectual accomplishment) over their opposites, and

. . . where, in doing so, that society harms countless numbers of people, including our children with disabilities, who are not seen to embody the chosen attributes (people with disabilities, elderly people, and others), and

. . . where most people are not conscious of the impact of these values on vulnerable people, even those who care for them deeply."

(Source: Klees, J. (2005) Our presence has roots: The ongoing story of Deohaeko Support Network. Toronto: Webcom Limited)

The above statements are so true. Despite my mom's deep love for me, she does not always do the right thing. Well, nobody is perfect. What is important is that she is not afraid of making changes to make my life better.

Neighbor

Our neighbor, a lovely lady, passed away at the age of 96. My mom used to go over to visit and sometimes stayed for tea. I have not visited her because of my fear for dogs. When her dog was in the back yard, I would keep a distance and stood across from the back lane to imitate the barking. We are going to miss her. One day, we will see her again in heaven.

What my mom loved the most was taking her out on bike rides. She made my mom happy because she enjoyed the rides so much. My mom does not have the same luck with us in terms of taking us out on the bike. She has to use "baits" to get me on the bike and she is not always successful. My Grandma says "no" half of the time for various reasons, such as too hot, too cold, not the right time. My sister absolutely refuses to ride the bike as she does not want to attract attention.

Musical Drama

My mom took me to a musical drama tonight. Even though the sound system had a lot of echoing and it squeaked loudly a couple of times, I didn't jump up and run away because there was so much music and singing. It did make me nervous and my palms were sweaty most of the evening.

The drama was about a couple whose relationship was romantic and loving when they were dating. It was a totally different story after marriage. They fought constantly and hated each other. The moral of the story was that good relationships do not happen naturally. It is important for couples to invest their time and energy in building and nurturing their relationships. It was touching to hear the actor and actress shared the dark moments of their own marriage. Through acting in this drama, their weakness and vulnerability hit home. They started to pray together and rebuild their relationship.

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails. . . . . And now these three remain: faith, hope and love. But the greatest of these is love. (I Corinthians 13: 4-8; 13) My sister could recite the above passages (in Chinese) when she was two-years-old.

My mom and dad had good relationships. They had differences in opinions, but they respected each other's view points. They had a few arguments, but could always worked things out. In their 7+ years of marriage, I can count on the fingers of one hand how many times they became confrontational.

Tour Bus

My mom has been too busy over the past couple of weeks to help me with writing my blog. Or, she was frozen by the lingering extreme cold weather - temperature dropping to as low as -47C with windchill. This week the temperature reaches above freezing. Being warm is not always good. We had freezing rain and the roads became very slippery. Fortunately, the temperature reached about +10C yesterday and melted the ice on sidewalks. With the rapid melting, there are puddles of muddy water everywhere. When they freeze overnight, they become skating rinks.

During one of those cold nights, my mom took me to a special event at the North Edmonton Alliance Church. She thought there would be music for me to enjoy. It turned out we only sang one song. The guest shared her testimony and I didn't understand a word of it. My mom was really impressed that I behaved exceptionally well the whole time. I was not as co-operative the last time we visited this church a few years ago. That time I absolutely refused to stay and we had to leave.

The highlight of that evening was our ride on a luxurious tour bus. My sister volunteers at a children program called Awana at our church (South Edmonton Alliance Church). She needed to use our van, so she dropped us off at the Chinese Multicultural Centre to catch the chartered bus. The bus was quite new and the seats were very comfortable. I loved the ride and I could see so much from sitting up high. The bus ride to and from Chinatown to the church made up for the lack of music.

Power of Inclusion

My mom went to a seminar yesterday and she heard a touching story. . . . .

An individual was born with severe multiple disabilities - blind, deaf, wheelchair bound and totally non-responsive. His parents believed in inclusion and integrated him fully in their own community. He attended regular classes in his community school. Being right in the community, not just in physical presence, but being included as a part of his community, he developed relationships with people around him. When he died at the age of 22, over 600 people attended his funeral. Families and friends celebrated his life by sharing pictures and stories of how he had touched the lives of others. He had accomplished a lot in spite of having absolutely no facial expression and no ability to interact with others. One person commented that he could not speak but he had a loud voice. He was valued by his community because his parents' belief in inclusion provided him with the opportunity to develop meaningful long-termed relationships outside of his immediate family.

My mom was not aware of inclusion as an option for me when I went through the school system. I attended segregated classrooms in schools away from home. Relationships I developed at the different schools ended when I moved from one special needs program to another in various parts of the city.

My mom loves me dearly and she was my sole primary caregiver for many years until she could no longer managed physically as a result of repeated whiplash injuries. My mom takes me everywhere and I have been in touch with a large number of people. Due to my lack of social and interaction skills, I have only developed a few friendships, mostly with my mom's generation. Recently, my mom recognizes the importance of building a circle of support for me.

My mom begins to actively involve me in developing relationships. When others greet us, instead of responding for me, she encourages me to do so. She helps me with initiating contacts and sharing information about me so that others can get to know me more. This helps to break the ice and as families and friends start to approach me directly, I have the opportunity to learn how to interact socially. This is a very useful skill for me to acquire. It is going to be a slow process and will take me years of practice to master the skill.