Disability Assistance Tools and Lupus

Disability assistance tools can be a game changer for people with lupus, far beyond crutches, canes, and walkers.

People with systemic lupus erythematosus (SLE) have many challenges that many other people don’t always understand. When most people think about disabilities, they think about very visible disabilities that affect mobility, and many people with SLE do have these issues. However, SLE affects all organs in the body, including sensory organs and nerves, and can cause issues with eyesight, balance, hearing loss, and memory.  Tools are used to overcome challenges, and well-known mobility assistance tools such as crutches, canes, and wheelchairs are important to many Lupus Warriors, however, there are many more lesser-known tools out there that can improve their lives.  

This article will focus on these lesser-known tools and apps that might make a huge difference in your life, as you deal with challenges with eyesight, hearing, balance, mobility, and cognition.

Screen Readers 

People with lupus sometimes have issues with their eyes and eyesight, either in the eye tissue itself or in the optic nerve. Even though millions of people around the world live with sight loss, the world can be tricky to navigate because it is built around full-color, 20-20 sight. A screen reader or text scanner can open up the world and make it more accessible for people who have issues with their sight. The wide range of screen readers available means that a person with lupus can find one that matches their needs and is compatible with their computer.

Most screen readers work by translating text on a screen into a speech synthesizer or braille display, or even magnify the text into a more readable form. A refreshable braille display translates the text on the screen into raised dots that can then be felt and read, then reset and reform as it ‘reads’ the next sentence. Often, this is a gel or plastic display, and will plug into the computer. 

Many screen readers also read the ‘alt text’ in images, often a description of the image or a few descriptive words. This allows people with impaired vision to still get the full benefit of article images. Some screen readers can replace the use of a mouse with verbal commands, keyboard inputs, or even head movements. Some screen readers are also capable of searching for strings of text on command or can be used alongside a word processor or dictation program to check spelling. Some can even read in multiple languages! Proofreading programs, portable word processors, and dictation programs are useful for writing even with issues reading, writing, or typing.

Screen readers range in price from free to $1200 and have a variety of features. There are even websites that enable text-to-speech for web content.

You can find a list of free screen readers you can download and install at Usability Geek. Notably, the program VoiceOver is already built into Apple products, so it’s already there, ready to use, and supports Safari, Opera, all built in Mac applications, and email and PDF reading. 

Hearing Aids

Hearing loss, though not usually talked about, is a symptom for around 30% of people with lupus. Lupus can cause a loss of hearing as the immune system attacks the auditory nerve and any of the other structures in the inner ear. There may be many more people with lupus who are not diagnosed, as it is often mistaken for age-related hearing loss, and can come with dizziness, vertigo, issues with balance, and headaches. There are many tools to help people with hearing loss. (The balance and vertigo issues are addressed in the next section!)

Hearing aids are speaker- or earbud-like attachments that amplify the sounds – turn the volume up on – sounds coming into the ear. Hearing loops work much the same way, and are worn around the shell of the ear.

Cochlear implants are surgically implanted microphone systems that turn sound into electrical impulses and communicate directly into the auditory nerve. If the auditory nerve is working well, then it can restore hearing.

In addition to these, there are assistive listening systems and devices that take advantage of captioning software and plug ins that transcribe audio files. There are also special phones that are made to work with hearing aids or are amplified so that certain types and pitches of sounds can be adjusted louder to match your hearing needs. Phones can come with captioning or utilize an intermediary that is either a live human or a text to speech synthesizer to make phone calls more accessible. 

Flashing alert devices like smoke detectors and carbon monoxide detectors are almost essential for safety, and alarm clocks can be modified to be vibrating or flashing. This article by Healthy Hearing recommends that, while there isn’t a store in particular that sells all of these items, many can be found with a simple google search, so go look for what you need. 

Mobility Aids

Long handled brushes, doorknob turners, sponges, drop guides, and holders can make a massive difference in quality of life for people with lupus. Adaptive reading aids that help with holding books, and pill organizers that help with remembering medication are also incredible tools for people with lupus. Lift chairs can help with standing up from a seated position with the use of a button. Many of these chairs are also good for posture adjustments, alleviating back problems.

As for stairs, stair lifts can be wonderful for handling difficult areas in the home.

Memory and Scheduling Aids

Smartphones and smart watches have many features that can help a person with lupus, including Schedule and reminder apps, timers and note applications. These features can be even more useful when dealing with cognitive challenges, fatigue, and brain fog. Many of these apps can be updated or activated with voice commands, which makes them even more accessible.  

Memory aids include reminder apps that use sound or vibrating cues to remind people of essential tasks. This can be as simple as a birthday or meeting reminder but can also be turned to help people with lupus work their way through complicated tasks. 

There are also mobility assistance applications specifically for smartphones that use the camera in the phone to track head movement and manipulate the phone in that way.

Other Tools of Use

You can find a list of interesting and useful tools at the Family Handyman here, that you might not have thought of.