Bismarck Consumers Advocate for Their Communities

Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”

― Margaret Mead

When tenants of two mobile home parks in Bismarck were told their parks had been purchased by new out-of-state owners and received letters and leases detailing new terms and rent increases they did not hesitate to band together and get local leaders involved in requesting modifications to the lease agreements. Several consumer-organized, very well-attended community meetings were held in August with Senator Dick Dever, R-Bismarck, in attendance along with Kent French, Director of Governmental Affairs with the ND Manufactured Housing Association.
The Dakota Center for Independent Living organized a Community Education Event presented by Legal Services of North Dakota based on Landlord/Tenant Law. The presentation, held August 29th at the Bismarck Veteran’s Memorial Library, was a direct result of consumers advocating for themselves by contacting Legal Services of ND and notifying all residents of the two mobile home parks of the meeting. Topics addressed at the meeting included: tenant rights/obligations; security deposits; late fees/penalties/other charges; rent increases; lease changes; utilities; landlord right of entry; abandoned property/landlord liens; termination/eviction.
The new owners have said they agree to some of the requested modifications to the lease agreements and are planning to accept many of them. Tenants are eager to see this in writing.

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Friendship & Blessing, Different Abilities

Everybody dreams of finding their dream job, but no one expects to find that their job will lead to a friendship that will last a lifetime.

My name is Erin Pasley, and I am from an Illinois family of six; including my late father, mother (who is my role model), and my three younger sisters.  I enjoy music, swimming, and most especially being surrounded by friends.  I am 21, and when I was moving from Illinois to attend the University of Mary in Bismarck at the ae of 18, I quickly found that friends were few and far between.  I found myself making friends who didn’t have the same morals as I do, and I lost/gained friends consistently.  I was working for a bridal shop through my freshman year of college and realized how unhappy I was in the workforce.

While I was job searching, a college professor told me about a family looking for someone to care for their teenage daughter with Down Syndrome.  I had no experience caring for someone with special needs; I really didn’t even know much about Down Syndrome at all, but I sent my resume and set up an interview.

I met the family at their house over the dinner hour and was extremely nervous.  They introduced me to their daughter Carly, and their two other children, one older and one younger then Carly, in the household.  She looked at me; I looked at her.  I saw this small girl listening to music that I listen to daily, and there was just something in her eyes telling me I was in the right place.  I greeted her in a long phrase, and I simply got a “hi” from her.  I am pretty sure, looking back now, that I talked down to her like she was a child.  She was 1 at the time, but her small stature made her look so young.

Many people interviewed for the job, but Carly’s parents hired me; to this day I don’t know why, but their decision has been one of the greatest blessings of m life.

The first few weeks were…awkward.  Carly utilizes very little verbal communication.  She has an Alternative Augmentative Communication (ACC) device, which she usually uses very little.  I felt like I didn’t know what I was doing.  She was unable to tell me if what I was doing was right or wrong.  I felt like I was working in the dark.  One day, though, as I became frustrated because I didn’t know what she wanted, I broke down.  In that moment, she made eye contact with me and embraced me for a short second.  In that moment I realized how genuine, kind, and spectacular Carly is.

Carly’s family made me feel like family – especially her mother Brenda, who was grown to be a second mom to me.  Together, we eat meals, watch TV, dance, tell cringe-worthy knock-knock jokes, go out on the town, swim, and so much more.  Carly and I quickly became close friends – friends who would talk about boys, having hard days, the good things in life, and sharing moments of achievement.

Our friendship is one of the defining moments that changed my life.  I learned that Down Syndrome is beautiful, and there is no much more to life than what I imagined.  Before Carly, my life felt superficial.  Today, I lead Youth Empowering Social Status (YESS), a group of people with and without disabilities working to bring inclusion to the youth in our community.  I’m involved in more things that I can count, and I have begun the journey to received my master’s degree in speech language pathology; I have never been happier.

In 2018, I was diagnosed with Fibromyalgia, brought on by a traumatic event I experienced in 2014.  I was devastated – the health problems I was working to overcome after that trauma were no longer curable.  It made working and school so difficult.  My symptoms include severe nerve pain, brain fog, insomnia, and fatigue.  This especially made maintaining friendships difficult. I didn’t want to go out and party, go out to eat, or go running simply because I couldn’t do it anymore, but that didn’t affect Carly’s friendship with me.

Carly and I have a friendship that is almost impossible to describe in works.  In the two-and-a -half years we have been together, we have overcome challenges every day, both mentally and physically.  I tell her that we have survived 100 percent of our struggles, and we will continue to survive.  She has inspired me to be the best version of myself, and I feel honored that I can now go out and inspire others to the best version of themselves, too.

When I reflect on my friendship with Carly and her family, I see a friendship that isn’t defined by disability.  I purely see a best friend–a second family–that I will have for the rest of my life.  This has become more than a job, it has become my life.  Even though I am done working as a respite for Carly in September to focus on the demanding hours of graduate school, I have assured them that they aren’t getting rid of me.  I will be back to take her out all of the time, as I need my partner in crime.  I am really proud to be a part of the lucky few.

29 years of the Americans with Disabilities Act

Ideas are powerful things.
They open the world. They eliminate discrimination. They ensure people are defined by potential. They change lives.
The Americans with Disabilities Act (ADA) is an idea that became reality, which is why it’s important each year to pause to recognize the importance of this landmark law and what it means to so many people across our nation.
July 26 marked the 29th anniversary of the ADA. That’s 29 years of changing lives and perceptions, of equal access and of making clear that we as a society will always stand for the rights of our family members, friends, neighbors, and countless people we’ve never met to live fulfilling lives, no matter their personal situation.
The ADA allows individuals with disabilities to participate in the world around them, and has likely changed lives in ways many could not have imagined when it became law in 1990, but while we pause each July to remember the benefits of the ADA and its importance, we also must honor its ideals each and every day of the year.
The ADA provides clear and comprehensive national standards to eliminate discrimination against individuals with disabilities. As a result, individuals with disabilities, as is their right, can live in their home and have equal access to education, jobs, recreation, shopping and entertainment. It has helped shape our nation, but the work is not done. We must remain steadfast to the principles, aiming for greater inclusivity, equality and fairness.
The ADA rightfully opened the world to individuals with disabilities. We must ensure that equal access remains a priority, while doing whatever we can to assist individuals with disabilities to live full and independent lives.

Tourette Syndrome Awareness Month

June is Tourette Syndrome Awareness Month. People living with Tourette Syndrome are so much more than a hackneyed joke. We are mothers, fathers, children, educators, award-winning journalists, Olympic Gold medalists, professional athletes, actors, rising pop musicians, authors, producers, and so much more. We are a community of equal, exceptional individuals who should not be defined by tics.

Now, more than ever, we need to band together and speak out, educate and inspire others to be more open-minded and break free of the stigmas that surround this disorder. It is time to get rid of the stereotypes, and to stop using Tourette as an excuse, slur or punchline. It is time to recognize that Tourette Syndrome is a medical condition: a neurodevelopmental disorder – and that underneath the uncontrollable symptoms are children and adults – human beings with hopes, dreams and feelings.

Tourette syndrome occurs along a spectrum—that is, its severity ranges from mild to severe. The majority of cases are mild and require no treatment; the impact may be so mild that casual observers might not realize the person has Tourette’s. Most people with Tourette syndrome lead productive lives with no barriers to personal or professional achievement. Intelligence and lifespan are normal and the overall prognosis is positive, although a minority of people with Tourette’s have severe symptoms that persist into adulthood.

There’s no cure for Tourette syndrome. Treatment is aimed at controlling tics that interfere with everyday activities and functioning. When tics aren’t severe, treatment might not be n

June is Tourette Syndrome Awareness Month. People living with Tourette Syndrome are so much more than a hackneyed joke. We are mothers, fathers, children, educators, award-winning journalists, Olympic Gold medalists, professional athletes, actors, rising pop musicians, authors, producers, and so much more. We are a community of equal, exceptional individuals who should not be defined by tics.

Now, more than ever, we need to band together and speak out, educate and inspire others to be more open-minded and break free of the stigmas that surround this disorder. It is time to get rid of the stereotypes, and to stop using Tourette as an excuse, slur or punchline. It is time to recognize that Tourette Syndrome is a medical condition: a neurodevelopmental disorder – and that underneath the uncontrollable symptoms are children and adults – human beings with hopes, dreams and feelings.

Tourette syndrome occurs along a spectrum—that is, its severity ranges from mild to severe. The majority of cases are mild and require no treatment; the impact may be so mild that casual observers might not realize the person has Tourette’s. Most people with Tourette syndrome lead productive lives with no barriers to personal or professional achievement. Intelligence and lifespan are normal and the overall prognosis is positive, although a minority of people with Tourette’s have severe symptoms that persist into adulthood.

There’s no cure for Tourette syndrome. Treatment is aimed at controlling tics that interfere with everyday activities and functioning. When tics aren’t severe, treatment might not be necessary.

There are medications to help control tics or reduce symptoms of related conditions.  There are also different types of therapies that are safe and effective treatments for Tourette syndrome.

More information can be found on the Mayo Clinic’s website at: https://www.mayoclinic.org/diseases-conditions/tourette-syndrome/diagnosis-treatment/drc-20350470

May is Mental Health Awareness Month- PTSD

If you have gone through a traumatic experience, it is normal to feel lots of emotions, such as distress, fear, helplessness, guilt, shame or anger.  You may start to feel better after days or weeks, but sometimes, these feelings don’t go away.  If the symptoms last for more than a month, you may have post-traumatic stress disorder or PTSD.

“Posttraumatic Stress Disorder (PTSD) is an anxiety disorder that can occur following the experience or witnessing of a traumatic event. A traumatic event is a life-threatening event such as military combat, natural disasters, terrorist incidents, serious accidents, or physical or sexual assault in adult or childhood.

PTSD is a real problem and can happen at any age.  If you have PTSD, you are not alone.  It affects over 14 million American adults (4.4% of the adult population) in any given year.

Who can get PTSD?

  • Anyone who was a victim, witnessed or has been exposed to a life-threatening situation.
  • Survivors of violent acts, such as domestic violence, rape, sexual, physical and/or verbal abuse or physical attacks.
  • Survivors of unexpected dangerous events, such as a car accident, natural disaster, or terrorist attack.
  • Combat veterans or civilians exposed to war.
  • People who have learned of or experienced an unexpected and sudden death of a friend or relative.
  • Emergency responders who help victims during traumatic events.
  • Children who are neglected and/or abused (physically, sexually or verbally).

What are the symptoms of PTSD?

For many people, symptoms begin almost right away after the trauma happens. For others, the symptoms may not begin or may not become a problem until years later. Symptoms of PTSD may include:

  • Repeatedly thinking about the trauma.You may find that thoughts about the trauma come to mind even when you don’t want them to. You might also have nightmares or flashbacks about the trauma or may become upset when something reminds you of the event.
  • Being constantly alert or on guard.You may be easily startled or angered, irritable or anxious and preoccupied with staying safe.  You may also find it hard to concentrate or sleep or have physical problems, like constipation, diarrhea, rapid breathing, muscle tension or rapid heart rate.
  • Avoiding reminders of the trauma. You may not want to talk about the event or be around people or places that remind you of the event.  You also may feel emotionally numb, detached from friends and family, and lose interest in activities.

These are other symptoms of PTSD:

  • Panic attacks: a feeling of intense fear, with shortness of breath, dizziness, sweating, nausea and racing heart.
  • Physical symptoms: chronic pain, headaches, stomach pain, diarrhea, tightness or burning in the chest, muscle cramps or low back pain.
  • Feelings of mistrust: losing trust in others and thinking the world is a dangerous place.
  • Problems in daily living: having problems functioning in your job, at school, or in social situations.
  • Substance abuse: using drugs or alcohol to cope with the emotional pain.
  • Relationship problems: having problems with intimacy, or feeling detached from your family and friends.
  • Depression: persistent sad, anxious or empty mood; loss of interest in once-enjoyed activities; feelings of guilt and shame; or hopelessness about the future. Other symptoms of depression may also develop.
  • Suicidal thoughts: thoughts about taking one’s own life. If you or someone you know is thinking about suicide, chat online at http://www.suicidepreventionlifeline.org/ or call 1-800-273-TALK (8255).

How can I feel better?

PTSD can be treated with success.  Treatment and support are critical to your recovery.  Although your memories won’t go away, you can learn how to manage your response to these memories and the feelings they bring up.  You can also reduce the frequency and intensity of your reactions.  The following information may be of help to you.

There are many types of therapy out there:

  • Psychotherapy
  • Medicine
  • Support Groups
  • Self-care: Connect with family and friends, relax, exercise, get enough rest, keep a journal, refrain from using drugs and alcohol, limit caffeine, help others and limit TV watching.

 

*Information taken from Mental Health America website.

North Dakota Nice: #SayYESS

One of the many reasons it’s great to be a North Dakotan is knowing that you live in a community that cares about you. Introducing YESS (Youth Empowering Social Status) – a brand-new organization that brings together young people with and without disabilities to build peer relationships and make sure no one is left behind.
YESS had its first full board meeting in January 2019. Board President Erin Pasley kindly offered to give us a little insight on what the community is doing to #sayYESS:
Tell us about YESS.
YESS is for people ages 14 – 24 with and without disabilities. For myself as the president, I know this is a need from my best friend, who has Down Syndrome. The public high schools do a fantastic job providing peer-to-peer programs that partner people with and without disabilities in the classroom (they even have inclusive sports). After high school, however, there aren’t really any peer-to-peer opportunities. YESS aims to fulfill this need for inclusion after high school by getting kids involved at an earlier age to give them community connections for a lifetime.
This is incredibly important to continue a supportive community environment outside of school, and helps youth be an active voice in the community and a positive force. It also helps youth know that they can do anything that they set their mind to. Similar to the Dakota Center for Independent Living – our founder, who are constantly involved with us and empower us to reach for the skies – if you have a goal, we will help you reach it!
I personally became a part of this group as I was diagnosed with Fibromyalgia. While others in our group have mental health disabilities, cerebral palsy, spinal cord injury, traumatic brain injury, etc. I have found support from all of them even though our disabilities are very different. They have taught me how to handle accessibility issues I face and we all together counsel each other on daily difficulties.
You just had your first meeting, and you’re already busy. Tell us what you have going on.
We are getting ready for our first two events: a mocktail mixer (March 23) and a conference (June 20). We have also spoken with multiple organizations and schools, including Burleigh County Public Health, Legacy High School, and Century High School.
Planning for our MockTail Mixer has been a lot of fun! It will be our very first event. We will have live music, mocktail drinks, popcorn, board games, visiting with others, and board games! It is March 23 at the Hillside Community Complex in Bismarck from 6:00 – 9:00 pm. We will also be a part of local conferences as vendors sharing our information, including Light It Up Blue (an Autism Awareness event).
What are you hoping to achieve in 2019?
With 2019 being our first year, we aim at having five or more organizations give talks to our board to help us grow as people serving those with disabilities, create a video explaining accessibility issues in the community, attend conferences in North Dakota, host our own conference (which is in the works), continue hosting fun inclusive events, connect with local lawmakers and attend legislative events, and create a community of youth that is supportive and fun.
Over the next five years, we hope to establish a yearly conference, continue hosting inclusive events, encourage independence in the community, and be a voice for youth with disabilities in legislature. Another piece we will always do is encouraging our members to be open about their disabilities and educate the community on them!
Tell us about your board of directors.
Five out of six of us have a disability. We all are unique! I (Erin Pasley, Board President) am working on achieving my bachelor’s degree from University of Mary in Speech Language Pathology and next year begin their master’s program. Alyda Blazek (Vice President), who does not have a disability, is a Special Education Major and has a passion for serving others. Andrea Frohlich (Secretary) is a consumer of DCIL and is a strong member of our team, especially with planning our conference in June. Bruce Klootwyk (Treasurer) has his master’s degree from University of Mary, is a substitute teacher, and is involved with Dreams in Motion. Dayton Farley (Marketer) is involved with computers in his free time, is a consumer from DCIL, and is also involved with Dreams in Motion. Colin Wetzsteon (Member) is from Hazleton and is a huge North Dakota Bison fan. You can also catch him skiing with Ski for Light. We are also occasionally joined by Vicki Laraway, Renee Wetzsteon, Roxanne Romanick, and Kathy Temchack!
What can North Dakota do to support YESS?
North Dakotans can support us by sharing our name, attending our events, getting youth with and without disabilities to our event, and donating to our cause! We often forget that some people with disabilities cannot drive and struggle utilizing public transportation. Getting to our events is essential!
Is there anything else you’d like to tell us?
We exist to prove disabilities don’t define us, and to encourage others that their disabilities don’t define them, either. Our disabilities make us unique and powerful, and we can make a huge difference.
[From Amanda: The topic for the YESS June conference is “Embrace Your Disability.” If you would like to participate in any of the events, learn more, or just say hello to this amazing group, visit them on Facebook at Youth Empowering Social Status – YESS. And if you happen to share this story, please be sure to use their official hashtag: #sayYESS

North Dakota Nice: #SayYESS

One of the many reasons it’s great to be a North Dakotan is knowing that you live in a community that cares about you. Introducing YESS (Youth Empowering Social Status) – a brand-new organization that brings together young people with and without disabilities to build peer relationships and make sure no one is left behind.

YESS was founded by Vicki Laraway of the Dakota Center for Independent Living in Bismarck, and had its first full board meeting in January 2019. Board President Erin Pasley kindly offered to give us a little insight on what the community is doing to #sayYESS:

Tell us about YESS.

YESS is for people ages 14 – 24 with and without disabilities. For myself as the president, I know this is a need from my best friend, who has Down Syndrome. The public high schools do a fantastic job providing peer-to-peer programs that partner people with and without disabilities in the classroom (they even have inclusive sports). After high school, however, there aren’t really any peer-to-peer opportunities. YESS aims to fulfill this need for inclusion after high school by getting kids involved at an earlier age to give them community connections for a lifetime.

This is incredibly important to continue a supportive community environment outside of school, and helps youth be an active voice in the community and a positive force. It also helps youth know that they can do anything that they set their mind to. Similar to the Dakota Center for Independent Living – our founder, who are constantly involved with us and empower us to reach for the skies – if you have a goal, we will help you reach it!

I personally became a part of this group as I was diagnosed with Fibromyalgia. While others in our group have mental health disabilities, cerebral palsy, spinal cord injury, traumatic brain injury, etc. I have found support from all of them even though our disabilities are very different. They have taught me how to handle accessibility issues I face and we all together counsel each other on daily difficulties.

You just had your first meeting, and you’re already busy. Tell us what you have going on.

We are getting ready for our first two events: a mocktail mixer (March 23) and a conference (June 20). We have also spoken with multiple organizations and schools, including Burleigh County Public Health, Legacy High School, and Century High School.

Planning for our MockTail Mixer has been a lot of fun! It will be our very first event. We will have live music, mocktail drinks, popcorn, board games, visiting with others, and board games! It is March 23 at the Hillside Community Complex in Bismarck from 6:00 – 9:00 pm. We will also be a part of local conferences as vendors sharing our information, including Light It Up Blue (an Autism Awareness event).

What are you hoping to achieve in 2019?

With 2019 being our first year, we aim at having five or more organizations give talks to our board to help us grow as people serving those with disabilities, create a video explaining accessibility issues in the community, attend conferences in North Dakota, host our own conference (which is in the works), continue hosting fun inclusive events, connect with local lawmakers and attend legislative events, and create a community of youth that is supportive and fun.

Over the next five years, we hope to establish a yearly conference, continue hosting inclusive events, encourage independence in the community, and be a voice for youth with disabilities in legislature. Another piece we will always do is encouraging our members to be open about their disabilities and educate the community on them!

Tell us about your board of directors.

Five out of six of us have a disability. We all are unique! I (Erin Pasley, Board President) am working on achieving my bachelor’s degree from University of Mary in Speech Language Pathology and next year begin their master’s program.  Alyda Blazek (Vice President), who does not have a disability, is a Special Education Major and has a passion for serving others.  Andrea Frohlich (Secretary) is a consumer of DCIL and is a strong member of our team, especially with planning our conference in June.  Bruce Klootwyk (Treasurer) has his master’s degree from University of Mary, is a substitute teacher, and is involved with Dreams in Motion. Dayton Farley (Marketer) is involved with computers in his free time, is a consumer from DCIL, and is also involved with Dreams in Motion. Colin Wetzsteon (Member) is from Hazleton and is a huge North Dakota Bison fan.  You can also catch him skiing with Ski for Light.  We are also occasionally joined by Vicki Laraway, Renee Wetzsteon, Roxanne Romanick, and Kathy Temchack!

What can North Dakota do to support YESS?

North Dakotans can support us by sharing our name, attending our events, getting youth with and without disabilities to our event, and donating to our cause! We often forget that some people with disabilities cannot drive and struggle utilizing public transportation. Getting to our events is essential!

Is there anything else you’d like to tell us?

We exist to prove disabilities don’t define us, and to encourage others that their disabilities don’t define them, either. Our disabilities make us unique and powerful, and we can make a huge difference.

[From Amanda: The topic for the YESS June conference is “Embrace Your Disability.” If you would like to participate in any of the events, learn more, or just say hello to this amazing group, visit them on Facebook at Youth Empowering Social Status – YESS.  And if you happen to share this story, please be sure to use their official hashtag: #sayYESS !]