A Letter to Bernie Sanders About Mental Health Care and Stigma

Below is a message I sent to Bernie Sanders. UPDATE 11/18/20 I sent an almost identical letter to my congressperson, Joe Neguse. His response is below my signature at the end of the letter to Sanders.

Senator Bernie Sanders,

I am not a constituent but I voted for you in the 2016 CO caucus and also this year. My blog doesn’t get much traffic which is a problem I am working on, but I link to your campaign web-site and also Our Revolution. I used to be a DSA member and between 1994 and 2004 I did a ton of activism. Since then I haven’t done much activism, partly because of my disabilities but since 2008 I have done a political blog which until 2018 got a lot of visitors and in the last 3 months I got a lot of visitors because I include the URL for my blog when I leave progressive comments on Politico. In the last 8-10 years I have volunteered 4-6 hours a week on average at a food bank. I left DSA for a hybrid of personal and political reasons but I am a fellow traveler and link to them in 2-4 ways in my blog’s links list. In 2002 I represented the Anti-Racism Commission of DSA at the National Conference of Sinn Fein Youth in Galway, Ireland. My blog is at- https://theblackandthegreen3.blogspot.com/

I am emailing you instead of my own Senator because I’m more familiar with you, because you’re a national leader, because I know you feel strongly about funding mental health care and because I can imagine the likely thoughts that Bennet and/or his staff will have when they read about a mentally ill progressive. I appreciate what you have done- we need more funding for mental health care. Although I’m very slightly middle-class, I qualify for SSI and SSDI and am part of what you might call the low-income part of the mental health care system. The mental health center I go to is fairly well-funded (it serves two counties in Colorado, one being Boulder), but sometimes they have to ration therapy. Sometimes I have only gotten therapy every other week and at one point they were talking about me taking a break from getting therapy. For a lot of us therapy is very helpful.

But in addition to funding, we also need to address what is called stigma. As the National Alliance on Mental Illness said several months ago in ads seen in movie theaters, stigma can result in people not getting help. I think there is a major problem with stigma in our society. When I have a good reason to, I mention that I am mentally ill. I don’t hide it. But recently when I mentioned it to 4 progressive activists in an email, 2-3 of them didn’t respond (it’s a little complicated).

I usually think of things this way. As individuals and as a society, we should do whatever is reasonable so that people with disabilities can participate as much as possible in our society. But I think a lot of people have a double standard between physical disabilities and mental disabilities.

I have had for roughly 25-30 years, Depression, Tourrette’s Syndrome, Attention Deficit Disorder, and Obsessive Compulsive Disorder. Although I would have said in the past that they floated between mild and moderate, now they hover around moderate, and the ADD is a little worse than that. To give you a better idea of what I mean by “moderate,” let me give you two examples: With the ADD, if I watch a two hour movie by myself, on average I have to stop and rewind about 10 times before I’m done, just because of the ADD. One aspect of the OCD that can be measured is that, after I make sure my car or bedroom door is locked, I go back 2.5 times on average to make sure it’s locked. I suffered a brain injury in 2010. It affects my hearing, my immediate/working memory, and my ability to organize my thoughts. It MIGHT have made my short-term memory a little flawed, but my long-term memory is still really good. At the risk of putting down other mentally ill people, I have a firm grip on reality.

After my ADD got really bad in 2007 and the 2010 brain injury there was an insurmountable barrier to me doing activism. I have since gone to an occasional event or protest and I don’t refuse to have face to face conversations with people about politics but I don’t look for trouble by going to weekly or monthly meetings where events are planned and there are discussions about goals, tactics, vision, and strategy. I do my blog, I volunteer at the food bank and I go to events as an audience member.

So I understand that there are some things mentally disabled people can’t do. But I think there are a lot of times when stigma keeps mentally disabled people from participating in our society as much as they really can.

I’ll be honest, I’m not real familiar with what they do because I haven’t needed their help, but I like to think that if I encounter stigma in one form or another, if it were serious enough I could turn to the local or state or national office of the National Alliance on Mental Illness. But I am sure they could use some more money. If someone encounters bias against them because they’re physically disabled, they get plenty of help. If someone is mentally disabled and less able to deal with bias against the mentally ill, I don’t think they get much help. I would ask you to look into NAMI and when appropriate promote them.

Thanks for your time and everything you’ve done for progressive causes. I don’t expect a personal response, but if someone working for you could let me know that this message was received I would appreciate it. If I don’t get such a response, I will try to contact you via your Senate office web-site, and after that I will drop it.

Tom Shelley
Boulder, CO 

 

********

 

Below the asterisks is the response I got from my congressperson. He doesn't address the issue of stigma, but he does seem fairly concerned about mental illness in a positive way.

***********

 

October 23, 2020
 

Mr. Tom Shelley

(I deleted my address)

Dear Mr. Shelley:

Thank you for contacting me with your support for mental health services. I appreciate hearing from you because it enables me to better represent the beliefs and values of our district, and I agree with you that Congress must do more to help individuals who are suffering with mental illness access the resources they need.

There are millions of Americans living with undiagnosed mental illness, and millions more who have received their diagnoses but aren't receiving the care they need to properly manage their health and wellbeing. I believe that every American has the right to high-quality, affordable healthcare, which includes mental health treatment. Too many individuals are forced to prioritize other aspects of their lives over taking care of their mental health, and too often there are not enough resources available for them to get the help they need. Mental health and substance abuse treatment facilities lack the funds they require to serve their communities, caregivers lack adequate support to assist their loved ones, and far too many people dealing with mental illness end up in prison, which only exacerbates their struggles. To that end, I am a cosponsor on H.R. 945, The Mental Health Access Improvement Act of 2019. This bill would provide coverage for marriage and family therapist services and mental health counseling under Medicare.

In addition, Colorado has one of the highest suicide rates in the country, especially for children and young adults ages 10-24. We need to be taking care of our children and youth populations and increasing resources that are available to prevent many of these tragic deaths. I am proud to cosponsor H.R. 4194, the National Suicide Hotline Designation Act of 2019, to designate the number 988 as the national suicide hotline and provide support to those in need. I also joined several of my colleagues in asking for increased funding for the National Institutes of Mental Health, Community Mental Health Services Block Grants, and other programs in the Fiscal Year 2020 appropriations process, and voted in favor of amendments to the Labor, Health, and Human Services Appropriations Bill that passed the House on June 19, 2019 to add additional funding for mental health programs to the Fiscal Year 2020 budget.

As your Representative, providing accessible mental health resources is something that I care deeply about. Should other legislation regarding mental health services come before the full House of Representatives for a vote, I will be sure to keep your thoughts in mind.

I appreciate that you took the time to contact me, it is one of my priorities that the constituents of the Second District of Colorado have their voices heard. I encourage you to continue contacting me about the issues that are important to you. Please visit my website at https://neguse.house.gov/ to sign up for my e-newsletter and receive periodic updates on my activities as your representative in Washington.
 

Sincerely,

Joe Neguse
Member of Congress