Monthly Archives: May 2016

Multiple Chemical Sensitivity

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By Aimee Sterk, LMSW, MATP Staff

May is Multiple Chemical Sensitivity (MCS) awareness month. Multiple Chemical Sensitivity is a disability in which people have multi-system illnesses as a result of contact with or proximity to substances or airborne chemicals (EPA). MCS is a chronic condition. Many people who have MCS lived or worked in areas where they were exposed to pesticides, smoke, fumes, or other pollutants. Substances that affect people with MCS include those listed above and perfumes and scented products, candles, food preservatives, aerosols, personal care products, paint, new carpets, formaldehyde and things that off gas formaldehyde like laminate floors, newspaper ink, cleaning compounds, printing and office products. Symptoms can range from headache and runny nose to fatigue, migraine, breathing difficulties, nausea, skin problems, and pain, to life-threatening reactions like seizures and anaphylaxis (MCS America).

Because chemicals, especially chemical fragrances, are so common in everyday life, people with MCS are at severe risk of not being able to access housing, employment, or meeting basic needs like shopping or participating in the community.  Many people with MCS are unemployed and some cannot leave their homes. Others’ homes are making them sick but locating housing that is free of toxic chemicals is very complicated. Additionally, a person may find that initially a home worked for them, only to develop reactivity to chemicals in that environment later.

The MCS Friends is an organization we at MDRC have partnered with in the past, looking at options for addressing housing issues. Their website has a variety of resources and ways of connecting to peer support groups. They also have a Facebook page.

I found some basic tips on accommodations and assistive technology (AT) options for the home and the workplace on the MCS America website and the Job Accommodation Network website:

  • Adopt a fragrance free policy in your home and workplace
  • Masks and respirators may work as AT for people with MCS to get out into the community
  • Live and work in places with working windows
  • Use good quality ventilation systems with HEPA filters and well-maintained ducts
  • Test the indoor air quality for dust, mold, mildew, and volatile organic compounds
  • Check the National Air Filtration Association for a local referral for air purification systems that are building-wide or at individual work stations
  • Notify people of plans to apply pesticides, paint, shampoo the carpet, or wax the floor so they may make alternative work arrangements
  • Use non-toxic materials and cleaning products
  • Use e-mail and telephone to communicate with people who choose to use fragrances
  • Build with non-toxic, chemical-free products
  • Consider organic clothing, bedding, cleaning products, and food

Do you or someone you know have MCS? What AT or accommodations are most helpful to you?

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Pain and Anxiety Relief With Mindfulness and AT

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By MATP Staff Member Laura Hall

Drawing of a man and a dog with thought bubbles. The man's bubbled is cluttered while the dog's has only trees. Caption reads

There is often an inside joke among people that have Cerebral Palsy (CP) related to how often we get told by those in the medical profession to “just relax”.  It’s funny, because, with CP of the spastic type, it is very difficult, if not impossible to get you muscles to relax especially if you’re trying or anticipating something painful.  Personally, being cold, anxious, tired, excited, or even having a thought can make every muscle in my body tighten.  There is a definite mind body connection when it comes to CP.  This is why, when learning about techniques to help with anxiety, insomnia, and shame resilience, I’ve had a hard time understanding exactly how to be mindful.  Mindfulness involves intentionally focusing your attention on the present moment, feeling relaxed, and accepting all of your thoughts, feelings and sensations without judgement.  How do I stay in the present, remain relaxed, and accept my thoughts?   That’s like the doctor telling me to relax before they poke me with a needle!

Yet, I decided to give mindfulness another try when my doctor recommended it as we were discussing the pain in my neck and shoulders from spasticity (I tend to pull my shoulders to my ears, especially at night).   After researching apps, books, cd’s and websites (there are many to choose from) I decided to try an app called HeadSpace (also a website), aimed at beginners, that takes you through a 10 minute mindfulness exercise for 10 days.  These exercises are free, but you can also get additional content with a paid subscription.  The app is easy to use and provides funny animation tutorials before the exercise.  The exercises themselves are easy to understand, and make a point to discourage efforting to make yourself relax.  That’s when it hit me – I was trying too hard to make myself relax instead of letting it happen naturally.

Index finger tracing the hand.Mindfulness is still not easy for me, it involves practice.  I can say that I am starting to get it, feel more relaxed, and even fell asleep one night during an exercise!  I’ve had to modify things a bit to help me stay in the present moment.  For example, I trace my fingers as I breathe in and out as a sensory reminder.  Other people have used tapping or hugging themselves as a way to enhance their mindfulness.  Assistive technology like weighted blankets, adult coloring books or objects like a smooth rock, candle, soft fabric, beads, or a bracelet work for other people.  My colleague, Aimee, has blogged extensively on alternatives to medication for depression, anxiety, PTSD, and relaxation. Check out:

Mindfulness doesn’t require you to sit with your legs crossed, burn incense, or say “ohm”.  You don’t even necessarily have to have your eyes closed. It just requires intention and practice and there is really no wrong way to do it.

What relaxation or pain relief techniques do you use?

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Increasing Access for People with Cognitive and Sensory Processing Disabilities

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By Aimee Sterk, LMSW, MATP Staff

I recently attended a great webinar put on by ILRU on increasing access (Creating Cognitive Access and Inclusion in the Independent Living Movement). The presenter was Julia Bascom, Deputy Executive Director of the Autistic Self Advocacy Network.  The webinar was the best of its type I’ve ever attended. I’ve participated in trainings and presented on accessibility many times so I was excited to learn a few new things, especially in the realm of including people with cognitive and sensory processing disabilities.

Some key take aways for me that involve AT that could help increase access:

  • Use non-fluorescent lighting
  • Provide and follow a schedule
  • Create sensory-free/respite spaces
  • Warn for noise and use no flash and fragrance free policies
  • Use sound systems that are high quality and don’t create feedback
  • Use name badges—consider using a color communication system on the badge that indicates people’s desired level of interaction/type of communication
  • Have one person talk at a time and use an object for the person talking to hold to signify that person is the person talking
  • When a person uses AAC, mic the AAC device, give the person time to type responses, and use good facilitation skills to assure full inclusion of all
  • Provide CART to help people who have auditory processing disabilities
  • Use visual cues in addition to sound cues

The webinar provided a wealth of information so I really encourage you to access it in its entirety. I’ve just given you a brief overview of some things that were either new to me and/or not often discussed when talking about accessibility.

What access issues do you notice are least discussed?

How have events creatively and smoothly addressed your access issues?

What area of access for you/someone you know are often not addressed?

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Our Increasingly Assistive Technology

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By Norman G. DeLislethe earth with arrows to things with words The Internet of Things

“The Internet of Things (IoT) is the network of physical objects—devices, vehicles, buildings and other items—embedded with electronics, software, sensors, and network connectivity that enables these objects to collect and exchange data.” -Wikipedia Article on The Internet of Things

Recently, I’ve noticed an uptick in the attention that the IoT is paying to devices and networking that would be of use to people with disabilities, and the general use that the IoT is increasingly having for everyone, including people with disabilities.

The most obvious example is making driverless cars a reality. And it isn’t simply the goal of totally driverless cars. Each incremental effort by manufacturers to make cars safer by automating safety actions or reducing information and decision burden makes cars easier to use for everyone, including people with disabilities. (See post by M. Catherine McAdam “My Driverless Car“)

There are others. I recently posted a link to a device that uses ultra-small amounts of microwaves to detect glucose levels so that no finger prick is required. In addition, it uses an app to record ongoing glucose levels so that more information about the dynamic of blood sugar is available for use by the person in making short term glucose management decisions and in understanding the long term trend of, say, Type 1 diabetes.

In addition to “things” that increase personal control over health or physical status, there are other potential tools for supporting recovery on the horizon. If the core of the Recovery Movement is the expansion of personal control over life through management of symptoms that reduce control and the building of a personal social network that supports the recovery journey, then the IoT will have “things” to offer us as well.

The use of Transcranial Magnetic Stimulation (TMS) is currently only a research tool in depression, pain control, empathy development, and a variety of other issues because (it seems just plain weird) it is expensive to do, and there is no solid framework for understanding what it does. But it is also non-invasive and has predictably short term effects allowing for eventual actual personal control over its use. Is it too strange to envision a genuinely portable device that you could use as a specific method of controlling a specific symptom? Is it even much too “stranger” to imagine a social network of people using TMS as a part of their social interaction?

Although environmental control has been a possibility for people with disabilities for some time, it has traditionally been a very expensive tool requiring the development of highly customized control systems. Now, because of the ubiquity of wireless and smartphones, and the drop in price for small devices that can control house systems (the expansion of the whole consumer market for such devices and environmental control), it is possible to create a voice managed control system using something like the Amazon Echo inside the house and a smartphone app when outside the house. Your personal system can be assembled a bit at a time, allowing you to customize it to your needs as you go.

There is a distinction in disability studies between “accommodation” and “accessibility” which points to the fundamental difference between a community response that creates access (accommodation) for a specific individual (segregation) and one that allows everyone (accessibility) to use the community (inclusion). I think the IoT is beginning to muddy that distinction by making universal access to the community a part of the general development of the IoT and the parallel creation of devices that can be customized by the individual person to connect to that general community. IoT is a trend worth watching by our community. We will also, as always, need members of our community to be at the forefront of making IoT realize the possibility it has for all of us.

Resources:

  • Internet of Things could be the low-cost ‘connectivity key’ that transforms lives in developing countries
  • Beyond the Hype: These Technologies at CES Can Help People in Need
  • Can the Internet of Things bridge the digital divide?
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