Should your rights as a person with a disability stop when you leave the country?

I think most people with MS would say that all people with disabilities around the world should have the same protections we have in the United States because of laws like the Americans with Disabilities Act (ADA). And yet our own leaders refused to acknowledge this when the U.S. Senate refused to ratify the Convention on the Rights of Persons with Disabilities (CRPD) in December, 2012. Why did that happen? Find out at a couple of events happening this week.

Many groups like the National MS Society were very active in supporting the CRPD. In fact, we helped to generate thousands of messages to our members of Congress, urging their support for the treaty. We'll be trying again this year as it agains comes up for consideration. However, it wasn't enough and we failed by five votes.

To learn more about these efforts, I invite you to participate in two events put on by our disability rights allies:

1) A conference call put on by national disability rights leaders, including U.S. Senator Tom Harkin, to discuss the plan for CRPD ratification. It will be Thursday, May 16 at 12 p.m. PT. To RSVP, click here.

2) An evening lecture at the University of Washington with three leading disability activists to explain the CRPD, examine why the U.S. Senate refused to ratify it, and explore strategies to achieve ratification of the treaty this year. It will be held this Thursday, May 16 from 5:00 p.m. - 8:00 p.m. at William Gates Hall at UW Law School. RSVP to Jodi Rose at jodir@dr-wa.org

The MS movement is stronger than ever.....A guest post from MS Activist, Simone Thompson

My life struggle with MS is painful and complicated. Knowing there are others suffering from MS is heart-breaking. MS does not discriminate. It is unrelenting.

Through pain, loss, confusion, fear and anger I finally realized the MS war is far larger than myself. I feel compelled to speak for those unable to speak for themselves. So many impacted by this life-altering disease rely on public officials to give voice and resources to aid in their battle.

I am ill, but I still have a voice!

Today, I fight for my brothers and sisters living with MS. I lend my voice to the battle for their success and cure - not just my own. Together we can win!

Directing my small voice to my local Washington State 9th Congressional District Representative, Adam Smith, I was delighted and enlightened to learn of his extensive involvement in the MS fight. Congressman Smith directly advised that he supportive of not only NIH Funding, but Representative Smith is also a member of the Congressional Multiple Sclerosis Caucus, which creates a political platform for discussing important issues for those facing MS. This caucus has two main goals: (1) Find solutions for people living with MS and (2) promote awareness and education about MS.

Congressman Smith is committed to finding solutions and cures for MS! His dedication and advocacy are truly appreciated.

I strongly suggest reaching out to your local and federal officials. Making your vote count is a priviledge and can lead to great results! Writing letters, attending caucuses and phone calls can go a very long way.

Did you know the Washington State Legislature has been cutting medical research funding?

It’s not well very known, but since 2005, the state of Washington has been funding innovative scientists in our own backyard who are dedicated to finding cures for diseases like MS through the Life Sciences Discovery Fund (LSDF). The funding for this research has come from the multi-billion dollar tobacco settlement that then-Attorney General Christine Gregoire negotiated to compensate for increased health care costs from tobacco use. Unfortunately, this funding has been cut more and more as the budget crisis in Olympia worsens.

I was reminded of this state program by a recent article in the Puget Sound Business Journal that highlights the recent round of grants. While there aren’t any that relate to MS this year, one of the largest grants ever by the LSDF went to Benaroya Research Institute in 2007 to focus on improved diagnosis and treatment of autoimmune diseases. That grant has since been used to leverage millions more in funding from other institutions like the NIH.

I’ve been looking for an excuse to highlight the LSDF on this blog, because it’s a great example of what more the Legislature could do if it had more funding. The LSDF has been continually raided by legislative budget writers to pay for other state programs like education and health care. It was initially expected to fund $350 million in research over 10 years but only will be able to fund $7 million in research this year. That's too bad because we have so many smart scientists who are willing to work harder and smarter to find cures to diseases like MS, but don't have the funding to do it.

I think we knew this already - there aren't enough MS docs out there

A new study just published by the American Academy of Neurology finds that the current shortage of neurologists is only expected to get worse in the years ahead. For someone who lives outside of a major metropolitan area like Seattle, this isn't new news. It can very difficult for patients to find a neurologist who specializes in MS care, especially in rural places like Montana and Alaska. And while the Society has been working on this issue for some time by recruiting medical students via MS fellowships, there's more work that can be done, especially by Congress.

Two years ago, MS Activists at the Society's annual lobby day in Washington, DC asked Congress to find solutions to address this issue and just last week, neurologists were again asking Congress to do the same thing. The long-standing nature of the problem and the lack of action by Congress points to the severity of the challenge we are facing, but that doesn't mean we should give up. In fact, I think it means we need to double-down on our efforts and work twice as hard until we find a solution.

And we need to be creative about our solutions. In 2011, our Chapter successfully pushed a law through the Washington State Legislature that closed a loophole discouraging foreign-educated MS specialists from practicing in the state. This legislation has already kept one MS specialist around and we hope it will continue to be useful in the years ahead as the shortage of neurologists gets worse.

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!

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? 

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?