Monday, April 15, 2013

52 members of Congress ask for more MS research, including two of our own!!

Every spring, members of Congress take a good look at the needs of their communities and draw up a list of their priorities for the next year. These issues differ widely from state to state, party to party, politician to politician. In many ways though, the lists are predictable. In Washington, where our economy is dependent on trade, aerospace, technology, and agriculture, our elected officials spend a lot of time talking about those issues. In Montana and Alaska, that means rural concerns and natural resources like oil and coal. These issues must appeal to a wide swath of voters and command the headlines. Politicians use these issues to make sure their constituents know that they have someone who has their back in Congress. So who has our back? Last week, I blogged about a few members of Congress who have been strong supporters of the MS community and I'm proud to tell you about a few more.

While MS research doesn't usually sway a lot of voters in an election, Representatives Rick Larsen and Jim McDermott stepped up to the plate in a big way last week, formally expressing their support for increased funding for MS research in a letter sent to House leadership. Why? Because they were asked by people who elected them to make MS a priority. If you live in their districts, you owe them a big thank you! For Rep. McDermott, that means people in most of Seattle (except the SE), Vashon Island, and Shoreline. For Rep. Larsen, that's western Snohomish and Skagit counties, southwest Whatcom County, and Island and San Juan counties. Thanks for getting our back!

Thursday, April 11, 2013

How do you define disability?

A few things coming across my desk recently have really made me think more about the definition of disability. The first item was an extensive segment on NPR that described a significant increase in the numbers of people who are on government disability programs (SSDI and SSI).  The author's point is that disability programs have become the "new" welfare for the unemployed and it's too easy to get on disability. The piece has been widely criticized by disability advocates for being unfair and missing the point that the increase is due largely to demographic changes (an aging workforce) and that it's actually very difficult to get disability benefits. A quick google search will point you to many of these criticisms, though this long one gave me much to think about. Whether the claims made in the NPR story are true or not, you can't deny that more people are on disability programs and we need to figure out a sustainable way to pay for them - and figure out what we can do to increase the self-sufficiency of people with disabilities (more on that below).

Then I saw an announcement about a speaker from the Disability History Museum, an online effort to educate the public about the disability movement over the years. It has some great exhibits and helped me understand that "disability" has so much attachment to paid work, it's no surprise that articles like the NPR segment and this one on disabled firefighters keep popping up.

In particular, both these things made me think about the diverse groups of people within the "disability community" - if there is such a thing. For example, someone with an MS-related disability likely acquired it during their adult life. They are aware of what it is like to not have a disability and so to them, a disabled life is a different life. For someone who has been disabled since birth, disabled life is not different, it just is. So it gives me a better understanding of why disability groups have traditionally played in different circles in Olympia - a problem I'm trying to correct by the way. Most excitingly, I'm working to bring disability advocates of all stripes together to support a major initiative to increase employment for people with disabilities.

This debate of what it really means to have a disability is also front and center to the disabled parking discussion that is going through the Legislature and the City of Seattle. Many assert that there is systemic abuse of disabled parking placards by people who don't really need them or have obtained them illegally. With too many placards in circulation, the City of Seattle asserts that people without disabilities are being left without any place to park. I know many people with MS have been accused (either silently or otherwise) of not being disabled enough, and shouldn't use these placards. But what are the real problems in the system? Are too many people disabled? (I know too many people live with MS in Seattle, but I don't have an easy way to fix that.) Do we make it too easy to have the government say you are disabled? I don't think many people with MS who have applied for disability would say that.

How do you think we should write laws that help people with disabilities (including unpredictable and sometimes temporary symptoms like those associated with MS) while not giving everyone a free pass? 

Monday, April 8, 2013

MS and Congress - what are they doing about us?

Too often, the public is unaware of what our elected officials are doing. Whether it's a lack of time, interest, or trust, Americans just don't usually know politicians do on a day to day basis. It's unfortunate, because when this happens, it's left up to the professionals (lobbyists) to tell politicians what is happening in the real world, rather than real people. I saw it all the time when I worked for a state senator in Olympia and it's the reason I came to work for the National MS Society - real people and their experiences aren't connected to their elected officials and they should be.

So this past few weeks, the Society has been taking real people to meet with the offices of our state leaders and it's been exciting to see what happens. First, in Spokane, MS Activist and small business owner Mike Burns met with Rep. Cathy McMorris Rodgers to present her with the Society's Representative of the Year award. He's pictured below, with Nicole Nida, the services manager with the Inland Northwest Chapter of the Society, on the right of Rep. McMorris Rodgers.

Rep. McMorris Rodgers has been a longtime disability advocate in Congress, serving as the lead sponsor of the Lifespan Respite Act (an important measure to support family caregivers) and co-chair of the Neurosciences Caucus. Mike shared his story of living with MS and the impact of public policy on his life. He currently gets his health care through WSHIP, a health insurance program for people with pre-existing conditions that will be made obsolete when the Affordable Care Act comes into full effect in 2014. While the fate of WSHIP is now in the hands of state legislators in Olympia, it's important for members of Congress to know what's happening with health care in the state and Mike is just the guy to spread that message.

At the same, other MS Activists met with the staff of Senator Maria Cantwell in Seattle to reiterate the need for more research funding so we can stop the progression of MS, restore function, and end MS forever. Three activists and a neurologist talked about the huge diversity within the MS community and the need for treatment options for people with progressive MS (and better and cheaper treatment options for those with relapsing-remitting). Senator Cantwell has also been a champion for the MS community - attending our events in the past and advocating loudly for more research into the causes of MS and other chronic diseases. But it's always important to keep visiting your friends and reminding them that we can't let up the fight!

These two stories are just a few of the activities that MS Activists have been up to recently, but they aren't the only ones. What have you been doing to raise awareness of MS with your elected officials?