Thank goodness for airport computer charging terminals and a couple of hours of layover! It has been a struggle sometimes to find the time and space to write for his blog given that most days I am either flying or meeting people. At night, I am pooped. At the time I write this, I am at Denver International Airport having just landed from Missoula, Montana.
Frankly, I really liked Missoula a lot and I was very impressed by the people who hosted me from the Summit Independent Living Center and the Rural Institute on Disability. I was very much struck by their “let’s get it done” attitude. Several women here have been actively working or researching issues affecting women with disabilities for quite a long time. I was happy to observe their grasp of different issues and to learn about a few things nobody else had discussed before (around me, at least).
So on Tuesday October 14, Summit convened a gathering of maybe 15 women from the community. Many thanks to Jude, Mary and all the staff at Summit for their hard work to get people there! Also of course many thanks to Marsha for putting out initial feelers and for her many ways of supporting this work!
After introductions and my usual blathering about my work, we uncovered the following issues:
Mothers with disabilities are more closely watched by the state. The government tends to interfere more in your life. I asked the women in the room how many were mothers and at least three quarters raised their hands.
There was a concern about women with disabilities who did not qualify for SSI, and who were living at shelters. For these women, their medical needs are not met and there is no way to get help. Many of these women are past having kids and are not yet of retirement age.
Many women with disabilities want to work, but transitioning from Medicaid to private insurance is very difficult and a disincentive. This is precisely the kind of disincentive that was being discussed at CROWD back in Houston.
Some of the women present had were traumatic brain injury survivors. One emphasized the need to educate people about women with invisible disabilities. However there is no money for this kind of effort.
When older women with and without disabilities become widows, they often neglect their health care needs in favor of keeping the homes they live in. Also, they may not be used to speaking up for the things that they need, given the (worldwide) tendency of women to put the needs of families and others before themselves. The women at the meeting said that basically a lot of women need to have improved communication skills, as well as improved access to affordable, accessible healthcare.
In small towns and rural areas, having someone go into a nursing home or institution carries very negative stereotypes. Families prefer to be able to take care of their own. Because of a deep pioneer culture of hard work, independence and pride, having a family member go into a nursing home can imply that the family has failed. Also, a nursing home means that outsiders, especially government workers, have the power to come in and control the family. The pioneer spirit can also mean that it is incredibly difficult for people to ask for help. People will not approach service providers, so service providers have to find creative ways to let people know where they can get assistance to empower themselves. Also, because in small towns and rural areas everyone knows everyone else, people are often afraid to ask for help because of what people will say. Also, in these areas, if a person is in an abusive situation, it is much more difficult to escape and get distance between the victim and the abuser.
Further exploring gender issues in Montana, depending on the region there can also be a deep bias against men as caregivers because men are supposed to handle outdoors type stuff. Women are supposed to handle all the other stuff. Both men and women however, especially in rural areas, work very hard, handling two and three jobs to support themselves and their families. (Obviously, if you are a woman with a disability who cannot do what is considered “work” very much, there will be self-esteem problems.)
The women at the meeting furthermore agreed that Western “moachoness” is hurting men because they cannot get help for things when they need it. Someone mentioned that Montana has the second highest highway death rate in the US. This reminds me that Marsha had mentioned the day before, at MIC, that Montana has the highest rate of traumatic brain injuries in the country.
Anyway, given all of this independence, people really want to be able to show they can do things themselves.
In terms of marriage, it was mentioned that for many divorce is something people really want to avoid and it is viewed very negatively.
A woman with a visual impairment noted that she cannot drive herself places, which led me to ponder how the hell people who can’t drive get around this very large state with very few people---676,000 or so. One of the mindbending things about this trip is definitely demographics. Seoul had 10.3 million residents. Texas is our largest state. Montana is large but has relatively few people. As a certain friend of mine would say, oy. Anyway, transit wise, Montana is not very crip friendly.
Back to families: families often do not want to apply for government benefits because it means the government is in their business. As you might imagine, Montana has a lot of conservatives, but also just independent people.
Regarding women on reservations...they are often geographically far from services and in remote areas. Families may also be against daughters having a certain amount of mobility freedom because it means being too far outside the family circle. Someone recounted the story of a Native American family in a remote location who had a daughter with cerebral palsy. The family would not jump the hoops necessary to secure a power chair for this daughter because they were worried she would go too far from home.
Many women with disabilities in Montana struggle with not wanting to be a burden.
It can also be difficult to find doctors who are willing to care for people with epilepsy. One woman with epilepsy recounted how no doctors would care for her when she was pregnant because they thought she would have seizures when she gave birth and would end up suing them for malpractice. The doctor who was willing to help her told her she had to have a C-section or else he would not help. And, they told her they were afraid she would pass her epilepsy on to the child, even though she had acuired epilepsy in a car accident. She is, however, currently a proud parent.
Someone mentioned that while there are problems in Montana, there are also many cultural strengths. The pioneer spirit certainly does lend itself well to community and survival in the face of the odds.
As mentioned previously on this blog last month, People First Montana also led a rally against the SSI marriage penalty. That work is still ongoing and they have presented the issue to Montana Senator Max Baucus, and they are awaiting word on whether he can help. In my opinion, the SSI marriage penalty is a massive issue for thousands of people with disabilities across the country who are denied formal legal partnership with the one they love, simply because if you are on SSI and get married, the government will significantly reduce your Medicaid benefits, which are a lifeline for so many. The day the SSI marriage penalty is killed will be a day of liberation for people with disabilities across the US.
We did discuss the issue of having a women with disabilities movement versus having a pro-choice feminist disability rights movement. I think we had people on different sides of the fence in the room, and so the issue was raised for the record but not discussed in depth (however I feel we are doing the groundwork now that will lead us to a serious community consideration of that issue).
Someone also raised the fact that girls with disabilities face many similar but some different issues than women with disabilities and we must work to empower girls more. There was some excitement from Summit staff about this.
On shelters and “homes” for teen moms: there is a shelter for teen moms that is accessible but only because there is a lift, and most of the rooms are in the basement. Folks were wondering what the percentage of young women with disabilities was.
Someone raised the issue of women with disabilities who work at home, and whether it is possible to apply ADA or Fair Housing laws to home workplaces.
Childcare workers are not trained to support mothers with disabilities, at all.
The issue of visitability was raised as something very important for women with disabilities (and this was mentioned in Texas as well). Having places that are visitable will contribute to a woman’s empowerment and self esteem.
We then moved on to talk about taking action. Folks considered different groups to organize, such as youth, seniors, Native Americans, rural people. Some populations are very, very difficult such as a polygamist community in Montana. The women really wanted to work to combat negative feelings surrounding different issues and dicussed ways to do outreach, such as through community events, food banks, cafes, gas stations, and other places where people come in to get things they need and talk.
Also, and very importantly, the idea of a national listserv for women with disabilities organizing women with disabilities was bounced about. We will need a little further discussion on this but look for news to come on this blog.
We wrapped up with definitely a sense of empowerment, and then I went off to lunch with Marsha and Rosemary (Don’t Call Me Dr. Hughes) Hughes of the Rural Institute. It was a pleasure to sit and talk with Marsha and Rosemary because between the two of them, they really have an astounding wealth of knowledge about disability and especially women with disabilities. Or, let me put it this way. Ever sat at a table with a bunch of really smart women (Bob Liston, does this sound familiar?)? Well, there’s this kind of tidal wave of intellect and network energy that comes through.
Rosemary and her crew at the Rural Institute were in the midst of prepping for a “train the trainers” conference on abuse prevention (FOR WOMEN WITH DISABILITIES!) next week. So I really appreciate their time because they were super busy!
Among the many things Rosemary and Marsha and I discussed, possibly one of the most important, for me, concerned learning about Western (as in, the Wild West) gender stereotypes, the “pioneer spirit,” and rural/small town culture. I am very glad to have visited Montana if only to begin seriously pondering this important aspect of life for many in the United States.
For example, if you DON’T live in a small town or very rural area, have you ever considered what it would be like to live where EVERYONE around might know your business? Seriously. Where could you get help? Would you be hesitant to ask?
Marsha mentioned that as someone who works on SSI issues (she is one the board of the Social Security Administration---did you know they have a BOARD?!), in Montana people are VERY reluctant to apply for SSI, as opposed to, say, Chicago. That’s because people will know....and they don’t want the government in their business. So how do you organize in a climate like that? Well, you can identify the people everyone knows...the bar owners, the hair places, the grocery stores, the gas stations...and see if you can train those folks to help pass the word about available help.
We also pondered the start up of a national women’s disability rights listserv. I really hope we can do this because as I am seeing it, a lot of good people are doing good work, but they need to communicate. So it would be good, in my opinion, for this to happen.
So this post is really long, but I want to thank the good folks in Montana for their support and sisterhood and also to Bob for putting up with me as well. I felt very sorry to leave Montana and would love to come back. Did I mention that it’s wildly beautiful there and I saw wild turkeys wandering through Marsha’s yard?