Everybody experiences vision loss differently. But it is not easy for anyone. You may have questions or anxieties about how you can continue to do the things you love. While professional vision rehabilitation services can help you cope with daily living challenges, sometimes it’s easier to hear from someone else who has gone through the same challenges you are facing.
Fortunately, there are several low vision support groups across Wisconsin where people with vision loss meet to share ideas and connect with others at various points in their vision loss journey. The Council provides two virtual support group options, but sometimes what you need is to sit in a room with other people who each bring their own perspective to the table.
“The great thing about these support groups is that there is so much that people can learn from each other,” says Amy Wurf, Education and Vision Services Director at the Council. “They are all living that experience, and there is empowerment in knowing that you aren’t alone in this. It can help to talk with someone who is in the same age bracket as you, or is living a similar lifestyle, and learn how they’re navigating life.”
Low vision support groups also give people with vision loss the opportunity to share their own experiences and strategies with others. In all corners of the state, low vision support groups run monthly to help connect people with new ideas and resources.
In Sparta, Evelyn Allen leads the Out of Sight Low Vision Support Group. Evelyn first started running the group in 2018. One of her goals for the group was to help remind people with low vision that they can continue to live a fulfilling life after they’ve lost their vision.
Evelyn attended the School of the Blind in New Jersey, where she not only learned to live independently, but was introduced to a variety of different experiences that can be enjoyed by everyone. “Just because you’re visually impaired, it doesn’t mean your life is over,” Evelyn says. “People can get very depressed when they lose their sight. Life isn’t over; life just begins.”
When Evelyn took over the group, she wanted to recreate that experience she had at the school. In addition to presentations from doctors, Aging and Disability Resource Center (ADRC) representatives, and other experts, the group regularly goes out into the community. They go on pontoon rides and fishing trips, visit movie theaters and garden centers, and take on many other different types of activities.
“I’m from the east coast, so I don’t know anything about flowers,” Evelyn says. “But going to the garden center shows that people don’t have to give up on their hobbies.”
The Out of Sight Low Vision Support Groups meets at 1 p.m. on the third Monday of every month at the Barney Center in Sparta and is open to the public.
Gary Norton began attending the Mequon/Thiensville Visually Impaired Persons (VIP) Support Group in 2014. Just two years later, he was asked to take on leadership of the group, and he has been leading them ever since.
The Mequon/Thiensville VIP Group meets on the last Monday of every month (except in November and December to make room for the holidays) at the Frank L. Weyenberg Library in Mequon from 10:30 a.m. to noon. Gary says about 20 people attend every month. The group is free for all who attend.
Gary says when he first began attending the meetings, the focus was on learning skills to help people live independently. But in recent years, Gary says that he’s added a focus on building relationships between the people who attend.
“That’s why I joined, to meet people in like situations to share how we do things,” Gary says. “When you can relate to someone having the same issues, it makes it so much easier to hear them say, ‘Here’s what I do.’”
The group also discusses different services available to people in the area, from transportation to guide dogs to medical professionals.
Murl MacKinnon runs the Stoughton Low Vision Support Group at the Stoughton Area Senior Center. Murl first started leading the group in 2020, and says that they have a dedicated group of regulars who attend every meeting.
The Stoughton group is not just open to those with vision loss, but to family members as well. “We’ll discuss what it means to be experiencing vision loss, and how that affects us,” Murl says. “We’ll talk with families about how to communicate with us about our vision loss.”
The Stoughton Low Vision Support Groups meets on the third Thursday of every month at 1 p.m. and is open to all.
Renee Kuester-Sebranek has led the Chippewa Valley VIP Support Group for the past five years. The group meets on the second Wednesday of the month (except in January, June, and December) at the Saint John’s Apartments Dining Room in Eau Claire.
The Chippewa Valley group meets a little differently from other groups. Every meeting starts with lunch, where members can meet and socialize over pizza. After lunch, at least one speaker will present to the group, covering anything from adaptive technology to identifying birds by sound. The group is free to attend, but lunch costs $5, and they do accept donations to help cover costs.
This group also likes to go out into the community. Renee says that every year, they go out to Perkins and to Owen Park in Eau Claire.
Renee says that the group helps show people who have recently lost their vision that they can still do almost anything they want. “When I went blind in 2006, I didn’t know of any resources and was very angry,” Renee says. “I didn’t want anyone to know I couldn’t see, and I didn’t want to use the white cane. That’s why I feel like I’m paying it forward with this group, because having these resources is so helpful in coming to terms with vision loss.”
The Chippewa Valley VIP Support Group is open to everyone, including family members of people with vision loss. Renee says that anyone with vision loss who has an opportunity to attend a support group should go.
“You don’t know what you don’t know,” Renee says. “It’s always good to meet with other people who are going through the same thing as you because you aren’t alone in this adventure.”
Meanwhile, a new group in Sun Prairie is just starting up and will begin meeting as soon as there is enough interest. Contact Amy at AWurf@WCBlind.org or at 608-237-8107 for more information.
“These groups are all so valuable,” Council Executive Director Denise Jess says. “For some people losing their sight, they could be the first blind people they’ve ever met. From practical advice to emotional reflection and peer support, it’s all incredibly necessary to keep people from getting stuck in their grief process.”
You can find more information about these and other support groups around the state at WCBlind.org/Vision-Services/Support-Groups/.
