April 26th I AM featured Medical Professionals with expertise in Spinal Cord Injuries (SCI) on COVID Vaccines and people with SCI sharing personal vaccine stories. Join Dr. Judy Stone, Dr. Suzanne Groah and Dr. Terrence Sheehan who will answer questions and give their perspective on the vaccines. Ian Ruder, Editor New Mobility as well as John Michaels from RFI and Michael Saunders from IN will share their personal experiences as people with SCI who have received the vaccine.
This is a transcript of some of the discussion and the Chat box in our weekly Zoom call.
Thank you to our Special Guests on Voting Issues:
Sharon Manecki – National Federation of the Blind of Maryland.
Ben Jackson – Disability Rights Maryland
Sharon provided an overview of the challenges to voting in Maryland starting in 2016. They have been telling the Board of Elections concerns about the voting process particularly accessibility and privacy protections with regard to the secret ballot. They have also been working through the legislature and the courts to address it.
This upcoming election, there is a Paper ballot – complete it, sign it and either mail it in, drop it off at the designated locations. If you need an electronic copy, you will need to contact the Board of Elections.
Email will have a link, you’ll get a password and you’ll get the electronic ballot. Then you have to print it out, sign it, drop it off in person or mail it back.
Marvin made three attempts to leave the nursing facility before he was able to move to his own home in the community. There were many difficulties and complications along the way.
At first, the court told Marvin his income was too high to qualify for services in the community through the waiver program. The second time he tried to leave the nursing facility, he was on a waiting list for three years, but never received services. The third time was a charm, Marvin said, and he finally received a voucher that allowed him to move into his own home in the community. His persistence paid off at last, and he was on his way to moving into his own apartment.
Once he was in his own apartment in the community, he encountered problems with accessibility. Marvin had to advocate for himself with property management to get these problems fixed.
One day, after Marvin left his apartment, he realized he left something there that he needed, but his aide had already left for the day. Marvin returned to his apartment to retrieve his belongings, but then he realized something – he had no way to get out of his apartment on his own, because there was no electric door opener. He was stuck. Marvin wrote a letter to the property manager about the problem, and 3 months later his electric door opener was installed, as well as an accessible showering system in his bathroom. Again, Marvin’s self-advocacy paid off.
During an interview, Marvin had some advice to offer others who are interested in moving out of a nursing facility and into the community:
“You have to really want it – to go after it and get it – otherwise you are going to be frustrated because everybody has things that come up and problems they are going to run into. You have to really want it.”
Marvin encourages people to make careful decisions about where they will move to:
“I tell people to insist to see the place before you move into it. There are certain things you need to make sure you can do with a disability or using a wheelchair; you need to be able to open the refrigerator door all the way, and you might not be able to even though the apartment says it’s accessible. A lot of the places just put a grab bar in the tub and call it accessible even though it isn’t. I know people who have lived for years without taking an actual shower – they just washed off instead because the bath wasn’t accessible to them.”
Marvin is appreciative of all the people who helped him before and after his transition to the community:
“I met a lot of helpful people out there. I couldn’t have done it on my own. Some of these people were support counselors or supports planners – they can help you the most because they know all the problems everyone else has had.”
Marvin also worked with The IMAGE Center during his transition into the community. Crystal Brockington was Marvin’s Peer Support Specialist and, after he moved out of the nursing facility, Crystal was also his Peer Mentor, with additional assistance from Lori Baskette. With encouragement from The IMAGE Center, Marvin participated in committees with the Long-Term Care Ombudsman and eventually the National Consumer Voice. Marvin currently works part-time at The IMAGE Center as a Peer Outreach Specialist and Peer Mentor, visiting residents of nursing facilities and coaching them on their options for receiving services in the community. Marvin also volunteers for Public Service Consultants to do additional peer outreach work.
“It’s rewarding – people cry [tears of joy] at the prospect of being able to leave [the nursing facility],” Marvin said. “Being out gives you a sense of self-worth that you lose in the nursing facility. The longer you’re there, the more everything just drops down – your morale, and everything you look forward to. There are so many things I can’t do, so I don’t ever think about those things – I just think about the things I can do and I try to do those things.”
Marvin has worked with residents in about 12 nursing facilities in Baltimore City, and he has helped over 100 people apply for waiver programs to receive services in the community. He is passionate about helping others to realize their potential for greater independence.
It is February, the month of love, romance and sexy fun. For people who are not in relationships, but want to be, February is a month of frustration.
Relationships are seen as the solution to lots of problems; people think that if they were only in a relationship everything would be wonderful. This is a myth that our media culture loves to perpetuate. Now nearly everyone, at one point or another has these feelings; people with disabilities can find themselves at a stronger disadvantage. Part of the issue is isolation, not going or not being able to go out to meet people. Once you get out of house and start meeting people then what do you do; what are some of the guidelines for relationships.
You have to manage your expectations for (and in) relationships. This does not mean you have to lower your standards or give up your dreams. What it means is there is huge advantage in being realistic. So here are some suggestions for those looking for relationships and those trying to maintain the ones they are in currently.
“Getting a date”
1.) Don’t think that a relationship will solve all (or even some) of your problems. We are bombarded with the message that all you need to be happy is someone else. How many movies are there with unhappy people until they meet the “One” and their world turns around. How many songs, books, plays etc. are there about how “love conquers all” and “being empty till meeting you”? Too many to count, and if you think that a relationship will fix every sadness, loneliness, whatever-ness inside of you; you are in for a shock.
2.) No matter what people like to claim, we are all products of the society we are raised in. No one is completely immune to the influence of those around them. So think about where your idea of what a relationship is and is not comes from. Think about real world examples, family, and friends. Don’t base everything on what you see on television. I am not saying that you can’t use them as good reference points or to get ideas. Just keep in mind that what you are seeing is not real, not even reality T.V. (especially reality T.V.)
3.) Don’t go out hunting for a date. If you go out with a goal of “I am going to meet someone and we are going get together” it is highly unlikely that you will meet someone. What is likely to happen is you will get discouraged and saddened. This is counter-productive to building relationships. The old wisdom about finding something as soon as you stop looking is somewhat true.
4.) Keep in mind what is important to you. What are your values? Look for people who share similar values. Don’t feel that you have to change who you because “it is the only way you will get someone”. If someone wants you to give up your values so that they feel better being with you, look for someone else.
5.) Don’t discount the idea of finding someone in an unlikely place. You don’t have to limit your relationship seeking to bars, dating websites, singles cruises, or whatever other place people traditionally look for relationships. If you discount an entire group of people you may miss out on a truly awesome person. This is something the disability community knows all too well. “I would never date a sighted person,” says a blind guy, not knowing if the next sighted person could be the love of his life. “I don’t ever want to date another person with a disability,” says the woman using a wheelchair, automatically shutting out some awesome people. The same principle applies to a lot of groups. The “I will never date . . .fat, Black, White, tall, disabled people, gamers, nerds, jocks, atheists, people on the internet, people who don’t use cell phones . . . whatever.” Only limits you and you never know someone until you start to talk to them. If you won’t get to that first step, then you will never know.
So there are five pieces of advice for those of you who want to be in a relationship. Feel free to use them, or feel free to ignore them. Some of them may not work for you; some of them may not apply to you. However they won’t hurt to try.
People with disabilities should have control over their own lives.
Most people agree with this statement. Practically everyone who works in the disability field feels that self-determination is the key to a successful and independent life. We encourage learning to travel alone, managing your money, taking charge of your health care, and more. However as soon as one subject comes up that people with disabilities want to learn more about, there is a scramble to make sure that it is censored. That subject is…. sex!
Those of us with disabilities are no less interested in sex than the general population; We are, often however, less educated about sex. Often times sex education in schools is left out of special education classrooms. People who are injured are often not told about the changes in their sex lives in rehab, other than to adjust their expectations, whatever that means!
I completed my thesis on sex for people with spinal cord injuries and cerebral palsy. Here at the IMAGE Center I designed a presentation on sex, dating and disabilities that is accessible, interesting and honest. The presentation has been well received by consumers and people who work with them. Caseworkers have told me about consumers who have tried to pay for sex or racked up huge credit card bills on porn sites or have never had a sexual experience or romantic relationship.
You would think that organizations that hold themselves out as meeting the needs of adults with disabilities would want to inform their consumers about this extremely important part of life.
But, here at the IMAGE Center we don’t always find this to be true. Management in some organizations, usually people without disabilities, gets spooked when it comes to talking about sex and dating. They either cancel the presentation or try to tell us which information we can present—even going so far as to tell us which slides should be eliminated. And, these are presentations to adults.
This ongoing attempt to censor our presentation reeks of paternalism. People with disabilities, who are all over the age of 18, have every right to make the decisions about what they would like to learn about sex and dating. At the IMAGE Center we believe strongly that adults need this information in order to prevent assault and abuse, and, to live more full and fulfilled lives.
People with disabilities have the right to information and if we are serious about promoting independence then we have to acknowledge sex.
With nearly universal access to the Internet, people will get information, some useful and a lot not! The value of my presentation is my information is accurate, accessible and I am willing to answer questions.
Please join me for my presentation at The IMAGE Center for People with Disabilities on June 12th at 6pm. Click here for more information and to RSVP.