Tag: people with disabilities

Sexuality and People with Developmental and Intellectual Disabilities

picture of couple from shoulders up looking away

As a sexuality educator, I have been honored to meet individuals with developmental disabilities, their families and paid caregivers in a variety of circumstances. Many understand and embrace the idea of people with disabilities as sexual beings. Some struggle with the topic, and are not quite sure if they are ready to pursue additional information.

Regardless of their comfort level, the people I meet are seeking assistance to help their client, loved one or themselves understand and express their sexuality in safe, healthy and fun ways.

Defining Sexuality

In my experience, I have learned that having a broader understanding of what sexuality is provides everyone involved with information and tools to overcome hesitation and begin to proactively build supports for the person. This is the definition I use:

Sexuality is the integration of physical, emotional, intellectual and spiritual aspects of an individual’s personality that express maleness and femaleness. It begins at birth and affects all the senses; it is not limited to genitals. Sexuality involves identity, reproduction, sensuality and intimacy.

From: Who Cares? A Handbook on Sex Education and Counseling Services for Disabled People. (Cornelius, D., Chipouras, S., Makas, E., Daniels, S. 1979. University Park Press, Baltimore.)

A definition that make sense

I like this definition for several reasons.

First, by saying that sexuality is both part of our personality and a lifelong part of who we are as human beings, it emphasizes the inherent nature of sexuality for all people.

Second, it lists four aspects of our personality that are integral to our sexuality: physical, emotional, intellectual and spiritual – clarifying that the physical aspect is only one area of sexuality, not the entire deal.

Finally, it identifies four avenues through which we both develop and express sexuality: identity, reproduction, sensuality and intimacy.

Sexuality is a part of us all

It is important to have a good idea of what sexuality entails so that the thought of it doesn’t scare us away from providing education, support and opportunities for people with intellectual and developmental disabilities (I/DD) to fully develop this important aspect of their personality.

Sexuality is always a part of who we are and we, as family members and paid caregivers, must create healthy and safe ways for children and adults with I/DD to build their own ways of understanding and expressing sexuality.

Patricia Carney
Patricia Carney

 

Accessing the Freedom Trail

double row of bricks that mark the Freedom TrailBoston has many opportunities for visitors of all abilities. One of the most famous attractions in Boston is known as the Freedom Trail.

The Freedom Trail

The Freedom Trail consists of sixteen sites related to Boston’s colonial history. The sites are connected by a red brick or red painted line, which is an excellent visual aide.

The Freedom Trail is not one cohesive entity, though. These individual sites are operated by the US Navy, the National Park Service, the Commonwealth of Massachusetts, the City of Boston and several private entities. Each site has its own website with individual access policies and features. None of the sites control the public streets and sidewalks connecting the sites. This can make it VERY difficult to track down access information in order to plan a trip to more than one site.

The Freedom Trail Foundation, https://www.thefreedomtrail.org/ is an organization of philanthropists and businesses that help market and preserve the trail. They raise money by providing walking tours with guides in historical costumes. The foundation does not control accessibility for any of the sites.

Is the Freedom Trail accessible?

Due to the diverse age of the sites, there is a wide range of accessibility. Some are not accessible at all while others have limited or partial access.

Some sites have little known alternate access. For example, people who cannot climb Tremont Street to the Old Granary Burying Ground may not know they can access it through an alley off Beacon Street. Many of the sites have made an effort to improve access, but have been limited by lack of funding and the historic nature of the buildings. Access for people with sensory disabilities also varies widely from site to site.

How can I plan a Freedom Trail visit?

Start with https://www.exploreboston.org/! I developed this website during my 2010 Gopen Fellowship through the Massachusetts Developmental Disabilities Network.

This site includes information on access for each of the Freedom Trail sites and contact information for each site. You will also find an alternative Freedom Trail route map which eliminates steep inclines, like Copp’s Hill, for those using wheeled mobility devices or who have limited stamina. To the extent possible, I have included information for people with different types of disabilities, as well as families with young children.

Don’t miss out!

Don’t let the age of the Freedom Trail sites lead you to assume that there is no access. Check out https://www.exploreboston.org/. If you still have access questions, call the individual site or the Freedom Trail Foundation for the information that you need. Don’t be shy about asking. Remember, it’s a free country!

Nora Nagle
Guest Author, Nora Nagle

Accessible Recreation Provides Exciting Options This Summer

Group of people in kayaks

Take advantage of the many wonderful outdoor accessible activities in Massachusetts this summer. The links below provide information on a number of possibilities-check them out to find a good fit for you.

Please note most programs require preregistration.

All Out Adventures, Easthampton provides outdoor accessible recreational opportunities throughout Massachusetts for people of all abilities, their families and friends. Summer programs include accessible kayaking, canoeing, hiking and cycling. (413) 527-8980, info@alloutadventures.org

Free Accessible Swimming Pools, including lifts, are available at all of the MA State Parks and Recreation Department’s 20 swimming pools.

AccesSport America, Acton offers high-challenge sports for children & adults with disabilities. Programs including kayaking, windsurfing and water skiing.
Ross Lilley, Executive Director, info@accessportamerica.org ,
(978) 264-0985

Barrier Free Massachusetts Playgrounds, offers inclusive playgrounds where children and adults of all abilities can play in a fun environment.

CHD Disability Resources – Adaptive Sports Program , Springfield includes a variety of adaptive sports providing barrier-free recreational and competitive opportunities for people of all skill levels and age groups.
Nancy Bazanchuk, Director, nbazanchuk@chd.org, (413) 788-9695

Community Boating, Inc. Universal Access Sailing Program, Charles River in Boston offers persons with disabilities and their guests use of accessible sailboats, transfer equipment, staff assistance for transferring and sailing instruction all for only $1.00.
Marcin Kunicki, UAP Director, (617) 523-1038 x24
marcin@community-boating.org

Community Rowing, Inc., Charles River in Boston offers beginning and experienced rowers trained staff and adaptive equipment. Call in advance for fees, scheduling, and needs assessment.
Chris Obusek, (617) 779-8267.
Check out CRI Adaptive Rowing Video

Mass DCR Universal Access Program provides outdoor recreation opportunities in Massachusetts State Parks for visitors of all abilities. Accessibility to Massachusetts State Parks is achieved through site improvements, specialized adaptive recreation equipment, and accessible recreation programs. Gigi Ranno, (617) 626-1294 (Eastern Mass) or
Marcy Marchello, (413) 545-5758 (Western Mass).
Download Universal Accessible Brochure .

Outdoor Explorations, Medford provides one-day clinics and multi-day overnight trips with activities including kayaking, backpacking, sailing, rock climbing and whitewater rafting. (781) 395-4999, info@outdoorexp.org

Piers Park Sailing , Boston Harbor provides programs for disabled youth and adults aboard 23-foot sonar sailboats. Adaptive sailing program is led by 2008 Paralympic Gold Medalist Maureen McKinnon-Tucker.
(617) 561-6677, maureen@piersparksailing.org

Recreation Opportunities MNIP Fact Sheet lists additional recreational opportunities in Massachusetts.

Have a great summer!

Supporting a Personal Goal Leads to Success

a new sprout in soil is held by hands that are held by other handsLast week we were inspired by Nora, a woman with Down Syndrome who lost 63 pounds on Weight Watchers. This week we will hear from some of the people she felt were important in the process. As they share their experiences with Nora, you will learn of the supports they offered that may be helpful for anyone with a disability trying to lose weight.
But as important, you will see the final result when someone is given support to reach their personal goal; a confident leader who also happens to have a disability.

Providing support

Once Nora set her goal of losing weight, her staff from Minute Man Arc, Ashley Poor and Marcia O’ Grady, worked closely with her by offering the following supports:
• Help in preparing a weekly menu and shopping list
• Food shopping with Nora to help her follow the list
• Providing transportation to and from exercise
• Visiting local restaurants to find healthy choices on the menu that Nora could select on her own
• Choosing healthy activities: Frisbee verses Nintendo or bowling verses going out to eat

Confidence takes charge

As Nora began to lose weight, she began to develop a whole new confidence. Carolyn Wellington, a group leader from Weight Watchers, describes the change in Nora as seen at the Weight Watcher meetings.

“At first, Nora came to the meetings and just listened. But as she started to lose weight, she began to realize that she could encourage others. There was a turning point at one meeting when somebody stood up and was talking about how hard it was to stay on the diet and all of a sudden Nora jumps in with ‘Just say no and eat a salad. That’s what I do’.”

And the thing is she did, so people began to listen.

As she worked towards her goal, Nora not only gained confidence, she also established credibility in the eyes of others. Nora was no longer the person with a disability, she was now a Weight Watchers success story and people were listening.

A leader emergesNora McShane wearing T-shirt with "Less is s'mores"

Once Nora met her goal, she wanted to see her friends also make healthier choices.

She began by successfully leading the campaign to change drinks in the soda machine at Minute Man Arc to include healthier options. She also formed a walking club and was instrumental in starting a nutrition class at Minute Man.

Yet her most impressive achievement reaches far beyond her initial goal of losing weight. In 2010, Nora became a member of the Board of Directors for Minute Man Arc, taking on a leadership role that will impact not only her peers, but the community at large.

Nora’s story began with a message on how to successfully lose weight, but it turns out to be much more. She taught us that anyone can be a success if they have the determination to reach their goals and the support to get there.

Anyone.

Nora’s Story of Weight Loss Inspires Us All

This week I introduce Nora McShane as a guest blogger.

My name is Nora McShane and I have Down Syndrome. Since 1992 I was overweight. My weight made me slow and tired and wearing a 1X was ugly. There have beeNora McShane wearing shirt with "Less is s'more"n many challenges in my life. I moved into my own apartment in 2002, but food quickly became a big problem. I ate cakes and cookies, high fat meats, soda and chips. Eating out become my world.

In 2003 I started watching The Biggest Loser. I knew in my heart I wanted to lose weight but wasn’t sure how. The people on the show gave me hope. I knew I needed a plan I could understand. For several years I tried fad diets. Complicated recipes and expensive shopping lists were too much for me.

In 2007 my first niece was born and I realized I wanted to be a good role model for her. Because of my Down syndrome, I will probably not have my own children, so being the best aunt is my substitute. I thought about my niece and how I wanted her to grow up knowing her aunt as someone who is healthy and takes care of herself.

Weight Watchers leads the way

Nora before weight watchers
before Weight Watchers

I decided to join Weight Watchers, and my friends and the ladies at Weight Watchers taught me to read food labels and figure out food points. My staff from Minute Man Arc, Ashley Poor and Marcia O’Grady, and I wrote weekly menu plans following the flex plan. I practiced each lesson I learned at the Weight Watchers meetings and also started to exercise every day.

In 18 months I lost 63 pounds. I am now a lifetime member because I haven’t gained back a pound… Not one pound.

Looking great, feeling great

Now I have a lot of energy and I see a “hot ticket” when I look in the mirror. At 32 years old people say I look 25. Recently, my second niece was born. I look forward to chasing her and her sister around the house and swimming at the beach.

I know many other adults with developmental challenges struggling to maintain a healthy weight. I hope my story will lead them to follow in my footsteps.

Ten Great Websites to Keep You Informed

Ready to get involved?

The following  6 website links will keep you educated on bills, community issues and state government throughout the year.

1. Where To Vote & to Locate Your Legislators will identify your elected officials and voting location.

2. Massachusetts Legislative Bills & Laws offers information on existing bills and laws in Massachusetts.

3. Massachusetts on Ballotpedia provides nonpartisan information on Massachusetts ballot news.

4. Congress.org provides information on public policy issues of the day and tips on effective advocacy. Sign up to get their weekly newsletter and an email of your representative’s vote on recent bills.

5. OpenCongress.org lets you know what’s happening in Congress by providing  official government data and news coverage.

6. League of Women Voters/Mass is a well respected citizens’ organization that encourages community involvement and hosts political forums in various communities.

For Disability Issues, these links are all helpful.

1. arcmass.org Take advantage of what Arc has to offer  to stay informed.

Sign up on their listserv and the Action E-List on Massachusetts Arc Legislative Action Center to be notified when you can make a critical difference on important state issues.

2. Impacted by Recent Cuts to Disability Services? Know Your Rights is a handy resourceful guide provided by Arc MASS

3. Mass Families Organizing for Change sponsors conferences, workshops and forums to educate individuals and community members about advocacy, services and local, state and federal resources.

4. Disability Policy Consortium members have access to advocacy training, lobbying leadership, legislative email alert service, and information on issues of importance. Check out their weekly updates on website.

Be sure to share your favorites with us.

Empowerment: The Ultimate Gift for the Holidays

Colorful Holiday Gifts

As the holidays approach, we are all faced with the challenge of how to spread joy without overwhelming people with a multitude of donations.

After all, giving is part of the holiday experience, right? And giving to people in need of assistance is especially rewarding as we envision them opening their gifts during the holidays and realizing that people truly care.

Yet as we look at holiday assistance programs, we want you to think about how you can use the generosity of the holidays to really make a difference in a person’s life long after the season ends.

Think about it.

Giving someone a meal during the holidays is a good thing, but if we don’t follow up with a budget plan and perhaps a food stamp application, that same individual may go hungry during the winter.

The importance of giving people control

birch in winter

We will begin next week by presenting an interview with Angela, a woman who shares her personal experience with a holiday assistance program that didn’t end in December. In fact, they assisted her in setting personal goals that have truly made an impact on her life and the lives of her children.

Listen to her words and think about all the people you know who may receive holiday assistance this year and what they would say if asked the same questions.

I think most people would tell you they appreciate the gifts and goodwill, but they would really appreciate it if you could help them take control of their own life.

So maybe next year they could be donating a gift to someone else.

Make sense?

5 Reasons Why We Need Another Disability Blog


As budget cuts wreak havoc on services for people with disabilities, we have a choice.

We can continue to advocate for more funding.  Another option is to really listen to one another and learn what supports do exist.

At New England INDEX we choose the second option. As a  respected leader in providing information and resources to the disability community,  we are now offering a venue for people to give  suggestions and share their personal experiences in regards to the resources we write about.

Thus our blog begins.

And our Blog Coordinator is…

My name is Sue Crossley and I am the Blog Coordinator, which basically means I will either be writing the blogs or editing those written by others.

I have over 30 years of experience working for people with disabilities and their families during which time I learned a few important lessons.

  1. A person with a disability is very capable of choosing their own dream.
  2. To reach that dream in life, whether you have a disability or not, you need support to be successful.
  3. The people who support you may be your family or paid staff from an organization that only serves people with disabilities.

But they also must include people from your community who realize that you have something to offer

I have seen many people with disabilities reach their dreams, including home ownership, because people in their communities supported them.

As Blog Coordinator, I want to find the people and programs in your community who want to help others reach their dreams.

A Blog like no other

Five hands coming together like spokes of a wheel

Our blog will be unique for five reasons.
1. A different topic will be presented each month based on what you have been researching on our website.
2. Your stories will be shared so that we can learn what resources have truly made a difference in supporting people with disabilities in the community
3. Exemplary programs will be highlighted each month, programs that may not just serve people with disabilities, but rather the community at large
4. Guest bloggers will be introduced frequently to share diverse opinions and experience
5. Most important, this blog will provide an opportunity for you to become empowered by learning what is working in your community.

Know your community despite cuts

We all stand together at a crossroads as budget cuts are impacting the life of everyone in our state. At the INDEX we believe that our communities still provide a wealth of resources regardless of funding and we need to learn more about these resources together.

Our blog begins next week with the topic of holiday assistance.

We look forward to hearing from you.