Sunday, March 30, 2008

Ethnic Community Radio

My mom volunteers for Chinese Outreach. Last year, I also volunteered and helped to fundraise by participating in the "Walk for Jesus" event.

About two years ago, Chinese Outreach (in partnership with CIAM Media) initiated the application process for establishing an Non-commercial Ethnic Community Radio. It has now reached the final approval phase and a public hearing is scheduled for May 27 in Edmonton. Six other parties are competing with us. We are in need of your prayer support.

My mom has been waiting for the hearing date since January and expected it to occur in March or April. She is disappointed that she will miss it as she will be leaving for Hong Kong in late April and won't be back till early July. Nonetheless she is thrilled that finally a date is set. God is good as generally the hearing takes place in Ottawa. This time the hearing will be in Edmonton. More of our supporters will be able to attend.

My mom is already planning for the 2nd Annual "Walk for Jesus". I will be the first one to register for the walk. My mom will assist me with promoting the event when she returns in July.

Monday, March 24, 2008

Cousins

Two of my cousins were baptized today. All the cousins were invited to have dinner together to celebrate. My sister was willing to take me along. For the very first time, I hung out with my cousins without my mom. I behaved well and I had a great time this evening. This ensures that my sister will take me again.

Another reason for having a good time is that I have a new iPod shuffle. My sister and her boyfriend downloaded a few of my favorite songs for me. I am glad they are able to figure out what works best for me.

I have used my sister's MP3 player a few times. I generally lose interest in listening to the music within a short time. Firstly, I am not familiar with most her music. Secondly, she has so many songs that I am not able to choose what I like to listen to. Based on the observation of my responses, my family can tailor the iPod shuffle to meet my needs. It gives them great pleasure when they succeed. Tonight I surprised them with a reward for their efforts. I was listening to my music when I arrived home. I walked toward my mom and I started to sing. I have never done this before.

Sunday, March 16, 2008

My New Role at Church

Today was my first day as a greeter at church handing out bulletins. My mom stayed with me to provide the support I needed. She handed me one bulletin at a time as she knew I'd hand out all to one person if I were given more. I could figure out that I was supposed to hand the bulletin to someone, but I was not totally clear who I should hand it to. I turned around a few times and handed the bulletin to the other greeter.

A few of my friends said to me, "Hi, Tim." I did not respond as I was so totally distracted by all the activities around me. There were lots of people coming and going. It will take me at least several weeks to get used to the environment before I can begin to focus. This is not going to be a problem because my mom has lots of patience and she is not going to give up on me.

It is great that I am given this opportunity to serve at church. I am not proficient in my new role yet, but I am sure that one day I will because my mom believes that I can do it.

Friday, March 14, 2008

Circle of Support

Guess what? . . . . . My mom is at another 2 day conference to learn how to plan for my future. Today she heard many successful stories of how some families creatively supported their special needs sons and daughters to live on their own and to lead meaningful lives. One recurrent theme is that all of these families worked hard to build a circle of support for their loved ones.

This is an area my mom has not paid much attention to in the past. She is so bull-headed and fiercely independent that she has always tried to manage on her own. It will be a big change for her when she reaches out to connect to others to build my support network.

Just as her head goes a mile a minute to generate ideas to try and wonders what will work, she receives an e-mail about a workshop on learning bridge building skills for meaningful connections. She is going to be there for sure.

For me to build relationships, I need the opportunity to meet the same people at the same place on a regular basis. That means I have to hang out with my peers (people my age). They are generally at school or at work during the day. Transportation is a huge issue in terms of meeting up with them in the evening. I have registered for DATS (Disabled Adult Transportation System). However, they have imposed a condition that I am not allowed to ride on DATS with a support person. I am fine without support while traveling on DATS, but I need a support person with me when I arrive at my destination. My mom will have to figure out a way to "beam" my support worker there, like how they do it on Star Wars.

Many of my support workers do not have a vehicle. Even if I am lucky enough to have a support worker who can drive me, it is not going to work because PDD limits the funds for transportation to 15 km./day, which is already used up by the daytime activities.

Thursday, March 13, 2008

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.

Friday, March 7, 2008

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)

Thursday, March 6, 2008

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.