Alaska
Seward, Alaska: a great accessible community to visit!
Seward, Alaska has proven to be another great community to visit if you are disabled or are traveling with a disabled person. We have found that there is much to do here with Quincy.
The boat harbor is a wonderful place to stroll around. There is a great bike path that runs the length of the community so we can stroll from one end of town to the other with Quincy at a safe and leisurely pace. The harbor has great shops and a wide boardwalk from which we can watch the boats and enjoy all the sights and sounds.
One of Quincy’s favorite places in Seward is the Alaska SeaLife Center which is an extremely accessible facility. The SeaLife Center has created a unique experience where we are able to watch sea life from underneath the surface of the water. Quincy is completely captivated watching the sea lions, otters and diving birds from their underground tanks. It is something to stand next to a glass tank and have a massive sea lion swim right on by! It also has an area where Quincy can touch sea life, like starfish and sea urchins. The sensory experience at the Alaska SeaLife Center is something delightful for all ages, but even more so for children like Q who depend on sensory input.
In addition to these attractions Seward also has a great community playground for the kids to play, wonderful restaurants that are very welcoming to families like mine, and, if you are the adventurous type you can always climb Mt. Marathon. The view from the top is breathtaking. But, be warned…it is a very challenging climb! We always enjoy gracious hospitality when we visit Seward and that, combined with great accessibility, definitely gives it a place in my rankings of Great Accessible Communities. If you get the opportunity to travel to Alaska, be sure to make Seward one of the places to visit!
Adaptive skiing with a bi-ski at Alyeska Resort in Girdwood, Alaska
It’s been a while since I have posted any photos and I thought it would be fun to share our most recent pictures of skiing with Quincy. Lucky for me my brother, Ron Niebrugge, is a freelance photographer, and with his help we were able to get some really good shots of skiing with Quincy. 
Both of these photos do a great job of showing just how unique it is to use a bi-ski. As you can see, Rob does an enormous amount of work. He is an expert skier and is also very strong. These photos are taken on a fairly gentle slope, but we often take Quincy on much steeper terrain. It takes a highly-trained adaptive ski instructor to make the bi-ski arc and carve across the fall line. My job is much easier. I am the shadow and my role is basically traffic control. I am usually off to the side of Rob and Quincy and I block skiers who may be getting to close to Quincy and I warn people ahead on a run that the bi-ski is coming. The bi-ski cannot react as quickly as a skier to sudden situations, so it’s up to me to keep Quincy protected from out-of-control skiers and other hazards. My other job is to assist loading the bi-ski on the chairlift. It takes two people to lift it as the chair lift slides under. We then attach it with a safety harness to the chairlift so it cannot slide off. So, although my role doesn’t have as much glory as Rob’s, I take comfort in knowing that I am an integral part of the operation and without me they would just be stuck in the lift lines!!
Why I love Girdwood, Alaska
We are in Girdwood this week, enjoying fabulous Spring skiing. You must understand that Alaskans put up with some pretty extreme conditions all winter just to ski…darkness, subzero temperatures, avalanche danger…so when we finally get the long, sunny, warm days of spring we enjoy every minute of it!
I mention Girdwood often in my posts because we spend almost half our time in this beautiful little ski town. My family loves being here. It’s such a small, quiet community filled with people who know us and accept us with all our limitations. We can do anything we want without being stared at or made to feel different. Girdwood is one of the most accepting places I’ve ever spent my time.
There is probably another reason why this little town has taken hold of my heart. I grew up in rural Alaska, in a small community in the Interior of state called Glennallen. Glennallen is very small, very remote…there were only 20 kids in my graduating class. Everyone knew everyone, we looked out for each other, and even after all these years those of us from Glennallen still share a special bond. When I returned to Alaska as an adult we made our home for several years in Wrangell, a small fishing community located on an island in Southeast Alaska. Wrangell was just like Glennallen…another remote community that took care of it’s own.
My home now is in Wasilla which has grown dramatically in the last ten years to become fairly urban city, at least by Alaskan standards. I enjoy the convience that comes with living in a larger town. After spending the first 30 years of my life without being able to do the simplest things like go to McDonalds or watch a movie in a theater, you can only imagine how much I enjoy living in what I considered a “normal” community. But, as my children get older and my life more hectic I find myself more and more drawn to the quiet intimacy of Girdwood.
Perhaps someday Rob, Quincy and I can figure out a way to make Girdwood our home. Of course, that is no easy task. Quincy’s needs are great and will only be more complex as she becomes an adult. Rob and I do not have the privilige of just picking up and moving to any place we like…we must make sure it will provide the supports that Quincy will need. And, unfortunately for us, the smaller the community the fewer the services for the disabled.
If Girdwood turns out to be a place that I am only a part-time resident, it will be okay. I already consider myself blessed to be a part of such a wonderful place full of wonderful people. If you ever get to Alaska, take the short drive south of Anchorage and check it out for yourself. At first blush you may say, “This is it??” but spend some time walking around and talking to the locals and maybe you will begin to understand how I feel. And, if it’s winter, then rent some skis and burn some runs at Alyeska! It doesn’t get any better than that!!
Adaptive skiing in Girdwood, Alaska for Spring Break
Next week is Spring Break for my family and I am really looking forward to it. The push from Christmas to Spring Break is tough in Alaska…I’m sure it’s tough everywhere, but it’s a killer up here where the weather is bitterly cold and the daylight elusive. We are starting to turn the corner, but spring is still a long way off for us. Our days are longer, but the cold is relentless.
It’s about this time every year that I realize I need a vacation. I would love to hit the sandy beaches of Hawaii, but have yet to find the courage to brave a 5 ½ hour plane trip with Quincy…and that’s just flight time. If you add in all the additional time for checking in, getting through security and flight delays it can turn into a full day of travel. That’s just more than either my husband or I is prepared to take on, especially when we are already worn out and in need of our own rest and relaxation.
So, as we do every year, we will stick close to home. Our plan is to ski and play in Girdwood. We hope the weather cooperates and we can spend as much time as possible on the mountain. The fresh air, exercise, good food, and a break from the stresses of work and life will do all of us good.
Someday I hope we can figure out how to travel to exotic, warm places with our family. But, until then I am thankful for that which we do have.
Varicella (chickenpox) vaccine mandate in Alaska
Last week when I was in Salt Lake City in a meeting with thought leaders from across the country dealing with vaccine safety policy issues, my local school district held a community meeting to discuss the newly mandated varicella vaccine for school children. I’m sure my Wasilla readers were probably surprised that I wasn’t in attendance at this meeting and you can only imagine my frustration at not being there.
First, just to simplify things let’s drop the fancy titles and call this vaccine by it’s layman terms…the chickenpox vaccine. That alone changes many people’s perspective about this mandate. Varicella sounds very technical and scary but chickenpox is just a normal childhood vaccine that most people my age experienced as children. It was unpleasant, but for the most part we all stayed home from school for a while, tried not to scratch our pox, watched a lot of Sesame Street and then got back to being a kid. No big deal. That’s right…for the strong majority of children, the overwhelmingly vast majority, chickenpox is no big deal. And, it’s certainly a much smaller deal than the potentially devastating side effects of the vaccine.
At my Salt Lake meetings I met some of the most interesting and educated people on this topic. The folks who were from Oregon were particularly interesting. Oregon is a state that allows for a philosophical exemption (not exactly, but they have a “personal beliefs” option within their religious exemption). The state immunization and public health officers really look at the vaccine issue much differently than we do in Alaska. They understand parent concerns and they seem to be willing to accept that parents may want to use alternative schedules when it comes to vaccinating their children. The state of Oregon does not mandate the chickenpox vaccine, either.
Alaska has a long way to go if it’s leadership wants to support parents rights when it comes to their children’s health. In fact, Alaskans have some the fewest rights when it comes to vaccines compared to parents in most other states. And, with this this fresh, new mandate coming from our leadership to force every single child in the State to have a chickenpox vaccine, I must say that any chance of gaining back our rights seems quite unlikely.
If I had been in attendance at our community meeting last week it would have been to hold state and school district officials accountable to telling parents all the facts. I would have made sure parents were given the Vaccine Information Statement on the varicella vaccine that outlines all the risks of the vaccine (soreness, fever, rash, seizures, pneumonia). I would have made sure that parents were informed of their rights to use religious or medical expemptions for vaccines and that these forms were readily available (found in Appendix C of the Alaska School and Child Care Immunization manual). And, finally, I would have made sure that that “risk communication” (yes, that is an official CDC term) about chickenpox was as neutral and fact-based as possible and not just a big scare tactic.
My hope is that my work on federal policy will help improve parental rights where vaccines are concerned. Perhaps that will pave the way for states like Alaska to take a hard look at their own policies and mandates. How ironic that a conservative, Republican state that is run by leaders who pay constant lip service to “less government” and “protecting personal freedom” would be so hardline on virtually eliminating any parental rights or informed consent when it comes to childhood vaccines.
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National Vaccine Information Center (NVIC)
