Going Full Circle: Using AT to Provide Services to Needing AT to Provide Services

By Rhett Simmons of West Coast Captioning

Assistive Technology (AT) has been a major part of my life for the last 23 years. 

In 1991, I started using AT to provide captioning services for Deaf and Hard of Hearing individuals. In case you don't know, captioning is the black box with words in it that you see on the television screen when you are at the gym or in a restaurant. So, even if you can’t hear the sound, you can read the captioning which puts the English words being spoken in the box. Without AT, this would not be possible. Sometimes captioning is broadcast over television and sometimes it is provided live at events or in classrooms. Now, we can also even provide remote captioning through the internet. Our agency provides all these services, and we use AT for all of them.

In the beginning as captioning was just coming to the forefront, software was developed to allow the key strokes from a steno machine (typically used by court reporters) to be recognized as English words. Those words were then projected to a computer screen which allowed the Deaf or Hard of Hearing individual to have communication access to whatever setting they may be in. With the advancement of the captioning software and the use of a computerized steno machine and a laptop, students could then be interactive in their university courses or in work meetings - which they had not been able to do previously. This AT was a huge advancement for the community.            

U.C. Davis wanted to try this cutting-edge technology, and they set up a pilot program. I was the captioner that was contracted to provide services for this pilot. Fortunately, the pilot program was a success! After that I started my captioning agency, West Coast Captioning. We started out in  colleges and universities providing educational captioning, but as requests grew, the agency grew as well. It has been exciting to see how AT technology has changed over the years. With each change, we can provide better services with easier access for our consumers. Being located in a capital city (Sacramento), our agency has evolved to specialize in governmental captioning. We also have captioners on staff who specialize in various other areas.

             

Rhett providing captioning at DCAD 2014 - Rhett and her daughter are in the bottom right

Over the last two years, AT has taken a different role in my life. I am a diabetic and now legally blind. I was diagnosed with gestational diabetes at the age of 28. After the birth of my daughter, the diabetes went away. But, at the age of 35, it returned and I was diagnosed with type 2 diabetes. Years later, diabetic complications started and have not stopped. At the age of 48, I had a stroke. At 50, I developed congestive heart failure and kidney problems, both of which have made Kaiser South Sacramento Hospital my home away from home. At 52, I was declared legally blind. I am now 54, and this - being legally blind - is the complication that I have struggled with the most.            

As a captioner, it is so important to be able to read what you are captioning so that you can correct errors and have the  captioning be as near to perfect as possible. Well, obviously without vision that can’t be done - at least not done in the way I had been accustomed to doing it for 21 years - or so I thought. Miraculously, the good news is that I am STILL doing my job. Unbelievable, huh?            

With the help of the AT, I have been able to continue captioning. Has it been difficult? Absolutely. Has it required a lot of flexibility and change? Yes, it has. But I am doing it! 

Rhett's two captioning screens

I still use the same captioning equipment I always have, but I now have a large (and I mean LARGE) screen attached to my computer. With specialized software for individuals that have low vision or are blind, I am able to enlarge the captioning I am doing on the larger screen while the captioning on the smaller screen stays the same. It is a miracle that, with the enlarged font and the inverted colors, I am able to see the words.            

With my agency, I also have a lot of office work. I currently use a CCTV to help me read my mail, sign pay checks, pay bills, and do invoicing. I didn’t even know about CCTVs until I became blind. This is something that can oftentimes be found in the AT Network Device Lending Library to borrow, should anyone wish to try it out themselves. I can no longer read text such as mail, books, or anything printed but the CCTV allows me to continue to see those things. It is the most amazing piece of AT that I use. I also have a portable CCTV that fits in my purse. I can take this to a restaurant and read the menu. Without this assistive technology, I would not have been able to continue to work or continue to do the many things that running an agency requires.            

What I am particularly thankful for is the fact that going into the field of captioning has allowed me to be exposed to the disability community. This has made my new journey so much easier. I have several blind friends that have inspired me with their professional and personal success and the way they live their lives. At times, I felt like giving up, as I got so weary. During those times, someone always came through to help lead me through it. It has been hard and I have changed a lot.            

I think being willing to change is the key here. The best advice came from a wonderful friend of mine, who also has vision loss. She said to me, “Rhett, if you are willing to do things differently, you are going to be fine. Step out of the box and be open to change.” 

Since then, several people have given me that same advice and this is where the AT comes in. I always go back to that solid advice when I feel defeated. I do things very differently now than I did just two years ago. I am sure that in two years from now I will be doing things differently again. I feel so fortunate to live in a time when AT is here to help me with these changes. If this had happened even 20 years ago, I would have had to quit. Perhaps someday I will reach that point, but it won’t be because of this disability. It will be because I am getting too old and it is time to retire.           

And actually, being blind is not all bad. At first I thought it was but now that I have settled in a bit, I am finding more and more good things about it. Yes, it is sad that I cannot see my daughter’s beautiful smile anymore. But on the flip side, she is apparently dying her hair every color of the rainbow right now and that, in particular, is a thing this mom doesn’t need to see – I’m good. Just sayin’…

Hooray for Independent Living Centers - Happy Independence Day!

by Emily Flynn, Youth/Independent Living Specialist, Solano County

I started working for Independent Living Resources of Solano and Contra Costa County in May of 2013.  In the past year I have learned so much! I have learned how people with all different disabilities can live independently in their own way.  This may mean getting them tools to budget their finances or to be able to travel on their own to appointments.  It can also mean giving individuals the ability to practice and hone their advocacy skills, know and understand their rights, and how to navigate the institutional systems dedicated to protecting their rights. 

 When I started as our center’s Independent Living Youth Specialist, I had very little knowledge of what Independent Living Centers (ILCs) had to offer.  Being a student with a disability I received the accommodations I needed throughout my schooling, but I had no help outside of school.  Now, one of my biggest goals is to make sure people with disabilities have all the support -both in and outside of school- that they need to be successful in their chosen goals.  

Emily and Rachel setting up an outreach event for Ability Tools

An amazing benefit to my job is how rewarding it is to teach a consumer some of the skills they can utilize to reach their full potential. Our ILC has several different facets, offering  support, education, advocacy, and outreach. The direct services we provide to consumers include independent living skills training, educational support, assistive technology services, peer support, housing referral services and benefits counseling.  

My favorite work experience at our ILC is the one-on-one work I get to do with the consumers.  Sometimes this consists of just sitting with the individual and sharing our experiences and struggles we have both encountered as a person with a disability, and providing advice to one another.  At times I have the opportunity to do some advocacy work with the consumer in different situations such as housing and school accommodation rights. Or, I might receive a call from individuals who don’t know where to turn or simply have no idea what kind of help is out there and I get to point them in the right direction and give them helpful resources.   

 At our center we are also fortunate to have a benefits specialist on staff that is WIPA certified to answer questions and guide individuals  through the Social Security process.    

Another great service provided by ILCs that I myself have used, is the assistive technology service.  Ability Tools, California's Assistive Technology program, has a network of AT advocates across the state that work in ILCs. These AT specialists are able to find or loan out durable medical equipment and other AT to individuals with disabilities that may not be able to find or afford the equipment they need. They also assist consumers with connecting to the AT Exchange to find AT equipment for free, low cost or to borrow or for free.  The services at your local ILCs can provide you the support and skills to enable you to live a more independent life.

The services provided at Independent Living Centers can really change people’s lives.  I am grateful for the opportunity to assist people every day.   It has changed my life and hopefully it can change yours as well. My hope is that  consumers won’t  go through the same struggles that I have experienced with my disabilities. Since ILCs are managed by mostly people with disabilities, this gives them a uniqueness that not all other nonprofits have. The goal of ILCs is to empower individuals and promote independence.  I would encourage any person living with a disability that may have questions to contact their local Independent Living Center.  

Let’s Talk About Sex

by Lady Love

 

*** This post is of an adult-themed nature ***

When I was in junior high school, a boy once asked me whether I can have sex and have babies -- because I use a wheelchair.  My immediate reaction was, “Yes, of course!”    

Then he asked me how and I replied, “Like everyone else!” 

Even though I had no personal experience yet, I knew my body enough to know that I could have sex.  Most people probably find his question rude and too direct but I thought he was also open-minded to have at least asked me about sex. My parents and most of my classmates never talked about sex with me because they assumed that a person with a disability couldn't have sex. 

The topic of sexuality and disability is often taboo and not discussed very much.  In college, I decided I wanted to find out why able-bodied people did not generally date people with physical disabilities.  This interest in this topic then led me to write a research paper about sexuality and disability.  I interviewed able-bodied people and people with physical disabilities about their sexuality and preferences in regards to disabilities. The results were very telling. One able-bodied interviewee said he had never thought about dating a woman with a disability because he thought he wouldn’t be able to have unconventional sex in the kitchen or the closet.  I found this response interesting, and also thought to myself, "Hmm... if only he had more imagination..." 

In my research, I learned that society often sees people with disabilities as asexual beings. This is a misconception that needs to change.  As people with disabilities, we are experts of our own body and should be proud of it.  We cannot let society define beauty for us.  Even though I have scars on my body from previous surgeries and my legs are skinnier than my upper body, my husband thinks I am beautiful.   

People with disabilities are sexy and can have fulfilling sex lives. There are also many different AT devices available that can give them more independence in this intimate arena - items that could even allow for some unconventional sex, too!   

Check out these different AT devices that people with disabilities can look into to enhance their sexual life:

 The Liberator Shapes

Liberator shapes are effectively pillows and cushions for wedging and rocking. These can be used to attain a desired position or they can be used to facilitate the necessary motion for intimacy. Liberator shapes come in many forms, the most common of which is the wedge. The crescent, the bean bag, and the double camel humps (not shown) are also useful for achieving new positions.

 The Intimate Rider

The intimate rider is a rocking chair that, with minimal upper body effort, can facilitate a pelvic thrust. The intimate rider was designed by a c6-c7 quadriplegic and is also recommended for individuals with stroke, arthritis, back pain, multiple sclerosis, amputation, and cerebral palsy as well as spinal cord injury. It is suggested for someone with moderate trunk stability and able to perform transfers however transfer legs are available for simplification. The Intimate Rider is low to the ground making many sexual positions accessible and can be purchased with accessories such as the positioning strap and liberator wedge. The intimate rider is a very safe alternative to the many variations of the sex swing which may or may not be stable and supportive.

The Thigh Sling

The thigh sling is made of leather for durability and is easily folded up for storage. The sling fits snuggly around the neck and has adjustable, padded loops for thigh straps. This helps a patient maintain an elevated and open position for easy contact. With creative positioning of additional leverage the thigh sling requires little to no motor control to achieve enjoyable sex.

 The Body Bouncer

The Body Bouncer is like the Intimate Rider in that it allows a disabled individual to achieve greater mobility during intimacy while other positioning devices are simply used to help one hold a given position. The body bouncer achieves this by using a spring activated seat. With slight momentum shifts the seated partner can achieve 8-9” of thrusting motion. By allowing the user to have a more dynamic sexual role the Body Bouncer can help break the mental barrier that disabled intimacy should only exist in a passive role.

 

The Love Bumper

The love bumper is a different take on the previously discussed Liberator Shapes. Though there are fewer contour designs available for The Love Bumper it comes with an opening which facilitates the use of a dildo or a vibrator during intimacy or self pleasure. Choosing the right love bumper shape and design may depend on the disability and an honest discussion between partners.