I had set my alarm for 7:30am. I was dozing half-awake in
bed, trying not to let myself fall back asleep. I was stretched out in the
comfortable queen bed. I felt the perfect temperature. My body felt stiff, yet
momentarily relaxed when I flexed, stretched out. My pillow was one with my
head. I didn’t feel restless. I felt a
plethora of relaxation and laziness that a pampered cat might feel.
I had a strange mental deliberation. I really wanted to
get myself down to the dining room for the breakfast which D’Arcy and Anne (of Belgravia
B & B, where I was staying for the night) were preparing. I knew it would
be good. I was hungry. I had read an entry in their guest book about fresh strawberries.
At this point, only hunger could get me out of bed. I lay in bed, trying to maximize
my time drowsing, trying to figure out the latest time I could possibly roll out
After procrastination, I forced myself to get up. I
changed into my bike gear and made my way downstairs to the dining room. There
was a large bowl of fresh strawberries, a basket of muffins, and there was more
to come. D’Arcy and Anne brought out a plate with Canadian bacon, eggs Florentine,
and an extra helping of scrambled eggs to accommodate my large calorie intake.
I don’t normally eat this well on the road.
After further procrastination and relaxed conversation,
Janice and I were outside with our bikes and ready to pedal. We took Highway 2
to Dartmouth, cut through Dartmouth on an arterial, and took the bike lane
across the MacDonald Bridge to the Halifax harbourfront where we finished our
pedal. Other than a 6km stretch of construction on Highway 2, it was an
enjoyable ride. Actually, not quite, we hopped onto the sidewalk in Dartmouth
to avoid more construction. The last 30km before Halifax, Highway 2 winds its
way along the shores of lakes and basins. It was quite pretty.
Janice and I finished our pedal on the boardwalk near the
Maritime Museum of the Atlantic. Last night, Janice, my mom and I were joking
about the funny pictures on the RV. We talked about doing certain poses with
them. Janice hadn’t forgotten this conversation. She insisted on taking the
photos of us posing next to the tacky picture of kids peering out the fake
window on our RV. I thought it was funny, but after a 100km ride I just wanted
to sit and sip my recovery drink. I did eventually pose for those silly photos.
My brother and mother had met a woman at a conference
several years ago. Her name is Penny Kitchen. She raises her eyes to say ‘yes’.
She lowers her eyes to say ‘no’. She raises and lowers her eyes to say ‘maybe’
or ‘I don’t know’. She can also spell quite quickly using her eyes. Her
communication assistant will ask her: “first, second [half of the alphabet],
vowel?” Then, using a chunking system and saying the most frequently used letters
first; Penny will indicate the letter she wants. It sounds slow, but Penny is
able to communicate at a remarkable speed considering the method she is using to
communicate. It’s quite fascinating to witness. Penny also communicates using a
communication device. She is currently trying to obtain a communication device
which uses eye-gazing technology.
My mom and I were staying with Penny’s parents, Dorothy
and Laurie. Penny and her assistant,
Monique, joined us for a spaghetti dinner at Dorothy and Laurie’s house. This
was the first time I got to meet Penny. I had only heard about how she spells
with her eyes. I was told she was quick. I didn’t realize how fast she is.
I heard many stories from the Kitchen family. I think there’s
a valuable lesson that can be learned from each and every one. Penny received
her university degree in business from St. Mary’s University in Halifax. She
lives independently; however, in order to do so, she needs to have an attendant
24-7, and receives funding for her
attendants. Once she received her degree, a social worker told her: “Don’t
bother looking for a job because you’ll lose your attendant care funding”.
There’s clearly a huge flaw when policy prevents someone from working who is
able and wants to work. The money Penny would earn from a starting-position job
would not come near to matching the funding she requires to pay her attendants.
Perhaps if provincial policy allowed Penny to work and collect a good portion
of her funding, she could work her way up to a higher-paying job and eventually
not have to rely as much on funding. Simply put: the “if you work, you don’t
get funding for attendants” policy is completely absurd. Penny is brilliant,
and because of this policy, she literally can’t afford to work.
That was just one story. Many experiences were shared
between our families. It’s sad that these stories exist. It’s frustrating.
Hopefully policymakers can learn from these stories. Hopefully people’s
attitudes will change to assuming ability. This is why we’re doing what we’re
doing. We get media, I write my blogs, we tell the stories, and hope that lots
of people will listen or read.
We never tell all the stories. There are too many. Some
of the stories are dark and cannot be told for personal privacy or political
reasons. I’ve learned more in the last 2 months than I’ve learned in an entire
year at school. A lot of what I’ve heard is tough to swallow. It makes me sad. It
makes me angry. I hate that these things have happened. I hate that they are
happening. But I see hope. It’s easy to get caught up in all the dark, sad
negatives. There are lots of positives. The perseverance of many people, such
as Penny and her family, has been inspiring. Barbara Collier’s (from ACCPC) Proposed Communication Bill of
could make a significant difference in
the lives of many if put into practice. If Canada signs the Optional Protocol,
the U.N. Convention on the Rights of
Persons with Disabilities (http://www.un.org/esa/socdev/enable/documents/tccoptprote.pdf
) could finally have some teeth in Canadian policy, ultimately improving lives
of Canadians who are differently abled.
That’s it for tonight. Tomorrow we’re on CTV Breakfast Television
bright and early.