What Does Helen Keller’s Legacy Mean to the Organized Blind Movement and the World Beyond? [Repost]

Many of us saw the Miracle Worker movie as children. We learned about a little girl, Helen Keller, born in the late 1800’s. According to the familiar story, Helen Keller became deafblind and was a frustrated, defiant child, until a hero named Annie Sullivan transformed her life with the gift of communication.

Rarely, though, do we hear about Helen’s life and work after the childhood “miracle” bestowed upon her by Ms. Sullivan. Nor do we often think of Helen Keller as a change agent in her own right. The following article provides some glimpses into Helen Keller’s adult life and work, and some speculations on how she might have fit into modern-day disability activism.
What Does Helen Keller’s Legacy Mean to the Organized Blind Movement and the World Beyond?

I can’t hear the whispers? Breaking down the barriers of Deafblindness [Guest Post]

This week’s guest post comes from Marsha Drenth. Marsha is the manager of Pennsylvania’s DeafBlind Living Well Services program (DBLWS) through the Center for Independent Living of Central Pennsylvania (CILCP). Deafblindness has been Marsha’s passion since losing her vision in 2004 and beginning to lose her hearing in 2007. Now totally blind and profoundly hard-of-hearing, Marsha uses numerous methods of communication, including Tactual Signed English, Bluetooth-enabled hearing aids, and numerous other technologies to live independently. In addition to her fulltime job as a statewide program manager, Marsha is highly involved in the deafblind, hard of hearing and blind communities both in Pennsylvania and around the country.

In addition to serving and helping persons who have disabilities, Marsha is also a wife, a mother of three adult children, and a graduate of Temple University, where she earned her Social Work degree. She lives north of Philadelphia with her husband, Joseph, and her service animal. She is passionate about empowering persons who are deafblind, hard-of-hearing, deaf, blind and disabled to receive the services they need for engaging their culture, becoming productive members of society, interacting with their environments, and expressing their own voice to influence their future.

I can’t hear the whispers? Breaking down the barriers of Deafblindness.

First, you’re probably asking what Deafblindness is. And how does it apply to me? First the medical version, for the purposes of this article, according to the Helen Keller National Center, Deafblindness is any combined hearing and vision loss that impacts a person’s ability to communicate effectively. This is the short definition, as I could get much more technical but won’t for now. It means that a person has both a vision and hearing loss, and the combination of both causes difficulty in communication, independent living, orientation and mobility, social interactions, education, and obtaining employment. In most cases, there are two different communities in which a DeafBlind person could originate from; the blind community and the deaf/hard of hearing communities. In other cases, some persons obtain both a hearing and vision loss over time or suddenly for various reasons. DeafBlind persons have a wide variety of hearing and vision loss, communication methods for expressive and receptive language, education, orientation and mobility, support systems, involvement, experiences, and exposure. The combination of hearing loss and vision loss can happen at any point in a person’s life and effects all races, ethnic backgrounds, educational levels, gender, income level, and any disability. So now to why does this effect the greater disability community? As blind persons use their hearing to navigate and understand the world; not supersonic hearing, not hearing better than others, but using that hearing in the best way possible. For example, when walking down the street, blind persons are able to hear buildings, doorways, trees, people walking by and traffic. As blind people, we are taught to listen for traffic to make sure that it’s safe to cross the street. As blind persons, we use our hearing to locate other people and objects within our environment. These are just a few examples of how persons who are blind use their hearing in the best way possible. Unfortunately, this is where I think the blind community has ignored and denied the DeafBlind community up until now. Blind persons cannot imagine losing their hearing. They think the world will be over if they do lose their hearing. Many times people will say, that will never be me, my hearing will always be good. And a million other reasons for ignoring the fact that they could lose their hearing at any point in their life. How do I know all of this, because I was once one of those blind persons who said those things! I am now DeafBlind. Yes, it can happen to anyone, at anytime, anywhere, for no reason.

Here is my story, in 2007, after being blind for several years at this point, I had begun to become lost in the most familiar environments in which I frequented on a daily basis. An O&M instructor friend suggested that I have my hearing tested. So I made the appointment, telling myself that I was just having a lot of issues lately and nothing was wrong. So I am sitting in the chair getting my hearing tested, and the audiologist comes in and says, yes you have a slight hearing loss. Of course my first reaction was that there is no way, not me. It was true, and I was fitted for hearing aids. I didn’t wear the aids, because I didn’t like the way they made me hear, or fit into my ears, and the fact that I was in pure denial. After being stubborn and in denial, I did begin to notice that I could not hear voices in loud places and I could no longer hear for the openings of doorways. Fast forward a bit, in 2011, my hearing took a sharp decline, not being able to hear people in the same room speaking loudly, understanding when a person was sitting next to me, hearing traffic, and using Jaws on my computer. Finally with much negative emotions I took those hearing aids out and began to wear them; although I still hated the idea, the reason for wearing the aids, how they felt, and how sound was distorted. Through 2011 to 2013, I went from a mild hearing loss to profoundly deaf. In the spring of 2012, I enrolled as a student at Temple University to finish my degree as a social worker. In the fall semester of 2012 and the spring semester of 2013, dealing with a major hearing loss and attending classes at a major university became overwhelming. I could no longer function with hearing aids and listening devices which increased my anxiety and stress; fearing that one day I would not hear traffic for example in the busy streets of Philadelphia.

During the summer of 2013, I was at a cross roads, knowing that going back to school would be much of the same, but also realizing that I no longer had the skills to function. So I made the very difficult decision to take a Leave of Absence from my education and attend the Helen Keller National Center for deafblind adults and Youth. HKNC is very similar to other centers, where you learn independent living skills, technology, orientation and mobility, and job readiness skills. The two areas in which HKNC is different from other centers, is that HKNC offers communication skills, like learning ASL or writing skills. The Orientation and mobility is targeted directly at teaching skills for DeafBlind persons to be independent. HKNC is a center in which other DeafBlind people attend for the same training, forcing everyone there to face the reality of hearing and vision loss. Looking back, being away from home, family, church and life was not exactly what I wanted to do, but spending the 10 months there was by far the best possible situation that could have happened for me.

Once I completed my training at HKNC, I re-enrolled at the University for my senior year. This last year of my undergrad career was going to be challenging as I now needed to use sign language interpreters to help with communication, to use Communication Access Realtime Translation (CART), and a Support Service Provider (SSP). Now instead of listening to Jaws, I needed to use my braille display to read my textbooks. For both the fall and spring semester, I took 17 credit hours, with an additional 200 hour a semester internship. In May of 2015, I graduated with my bachelors of social work degree. I am now employed as the Program Manager for the Pennsylvania Deafblind Living Well Services Support Service Provider Program.

I have summarized my story of hearing loss, not to make myself sound inspiring but to help people understand how hearing loss can effect a person and the different barriers faced when hearing loss becomes a factor. I am now wearing the most powerful hearing aids on the market, but still struggle to hear speech and environmental sounds. I am one of the many deafblind persons who has one foot in two different communities, I belong to the blind community and the deaf community. For large meetings, I use a tactual English interpreter. For one-on-one interactions in a quiet environment I can use a Bluetooth microphone system that feeds directly into my hearing aids. To cross the street I use a street crossing card that asks the public for the assistance to tell me when its safe. When I am out alone needing to communicate with people, I use communication cards. I am at this point able to verbally express myself. I no longer talk on the phone because the telephone distorts the sound of a person’s voice too much. I now use non-auditory non-visual techniques to prepare and cook meals. I continue to enjoy listening to music, but unless I have heard the song before I can not hear the lyrics. As before I still enjoy community, social, organization, religious events with help from others.

So here is where I come to my topic in a roundabout way. Support Service Providers for persons who are deafblind. An SSP is the ears and eyes for a person who has a dual sensory loss. SSP’s help with human guiding, facilitating communication and providing environmental information. An SSP is absolutely not a personal care attendant, a care taker, or a nurse; SSP’s do not help with personal grooming, bathing, toileting, feeding, or hygiene needs. SSP’s work with adults who can self-determine with their own finances, and other personal matters. SSP’s are trained specifically to facilitate, not to do for the person, but instead to empower. SSps are not interpreters, and vice versa. Interpreters help bridge the language barrier and are used for legal, medical, financial and educational needs. Sometimes interpreters can also be trained as SSP’s, but not all SSP’s know sign language. I have used SSP’s for personal, professional and educational needs. For example, for social events I will employ an SSP to help with providing environmental information, navigating the surroundings, and facilitating communication. As a student in my senior year, I used an SSP for my one-on-one case management social work intake visits. In this case, an SSP would help with environmental information of our surroundings and of the customer’s non-verbal communication. In an educational setting, I have used an SSP for giving presentations, to provide me with the nonverbal and verbal communication of my audience. As a blind person, I would have never imagined needing or wanting to use an SSP. Now an SSP is absolutely vital to how I function in life.

Only about 30 states in the United States have SSP programs where the SSP’s are paid trained individuals. As you would imagine, the deafblind population is very small. Here is where I would like to ask for your help. What I am asking is several things. Acceptance; we are DeafBlind, there is a National Federation of the Blind DeafBlind division. We might do things differently than you, or as other blind persons, or even differently than other persons with disabilities; but we, deafblind persons do them in a way that works for us. Independence is in the eye of the beholder, we deafblind persons achieve independence as much or more than blind persons. Our independence is no less or more than others. We do not expect that you will understand what it’s like, but we do desire to be a part of the greater community and accepted within the fold. If you meet someone who is not like you, who might be lost, who might need help, that person could have a hearing loss, have a cognitive disability, mental illness, or numerous other disabilities. That person is not asking for a hand out, but the help or assistance as everyone needs from time to time. Deafblind persons are asking for the collaboration of everyone. When legislation, policies, restrictions effect the blind or deaf community, those same things will affect the DeafBlind community too. In other words, not only are you paving the way for the blind, but for the DeafBlind, or the Deaf, and the disability community as a whole. We are asking that you don’t forget to fight for us too, as I am sure we will fight for you when the same situation would come along. But further, when legislation, policies, regulations come along that are very specific to the DeafBlind community, do not bash, tear down, hinder the efforts to change even if you do not understand. It is this greater understanding that as a deafblind person I have gained from losing my hearing. No, I don’t understand what it means to be a person with other disabilities; but their fight is my fight. They understand the struggles, I understand the struggles, and we all should work together. There is power in numbers, so please walk aside me as a deafblind person, walk aside all people with disabilities for our right to be equal.

Guest Post: Living as a Blind Person with Multiple Disabilities

Beginning today, I will be featuring a guest post from a different disabled person on the third Friday of each month. This month’s post comes from Reina Grosvalet. Reina Grosvalet is passionate about making life better for those with disabilities and chronic illnesses as she is a spokesperson for individuals with multiple impairments and rare disorders. She involves herself in occupations that directly relate to bettering the lives of those with disabilities by working as an accessibility subject matter expert, and she provides insight into living with a rare disorder by sharing her journey with Mitochondrial Disease. If you want to know more, follow her journey with Mitochondrial Disease at My Journey with Mito and check out her LinkedIn page at WaldorfPC
Living as a Blind Person with Multiple Disabilities: The difficulty of Getting Adequate Support

I have been blind most of my life, only blind and nothing more. I got taught in school using the resources that are in place for blind children, and I attended summer camps for the blind to learn important life skills. I even attended a school for the blind from ages eleven to eighteen. The resources given to me early in life and the training at the blind school truly did set me up for success. Upon graduation, I was ready to face the world and really make something of myself. I was armed with independent living skills, the knowledge about my civil rights and information about various technologies designed to help me function optimally as a blind person. All went well for a number of years until a neurometabolic condition, Mitochondrial Disease, caused additional disabilities. Sure, I did contend with health problems most of my life, however, life got real interesting when I started needing to depend on hearing aids and a wheelchair.

Now that I found myself living with multiple disabilities, there were new problems. When trying to get help with living as a blind person with two additional impairments, I quickly discovered how hard it was. When I first started relying on the use of a wheelchair for traveling long distances, I asked staff from training programs for the blind if it were possible to train a person who was blind and in a wheelchair, and I was told that they had never worked with anyone with such an impairment, thus they did not know how to help. Determined not to get discouraged, I taught myself some adaptive techniques by relying on the blindness training I already had and being creative and thinking out of the box. I also asked others whom I knew were blind wheelchair users for tips and tricks. All was fine for a while, and I was living my life to its fullest. Things got more complicated when I started losing more hearing.

I had a very mild hearing loss that came about when I was seventeen; however, it did not interfere with my ability to travel safely. Sure, I found it hard to hear some things, but it was more of an annoyance rather than a hinderance. But in May of last year, I lost more hearing, and the loss was worse by late summer. As a matter of fact, the hearing loss got so bad that I was almost hit by a car when crossing the street. Fortunately, I was able to get fit in with the audiologist and got a next day appointment.

I went to that appointment, and I got the hearing test. Thankfully, I was surrounded by good friends of mine because the news was not good. I was told I needed hearing aids, and I was given a pair that day. Yes, I shed tears because I knew that my life was forever changed.

For months, I tried finding people who were experienced with working with individuals who were blind, hearing impaired and in wheelchairs. I ran into many who had no experience, thus were not sure how to help. I finally found some mobility teachers who were willing to work with me. Two of them worked with only people who were blind wheelchair users but had never worked with those who were blind, hard of hearing and in a wheelchair. Nevertheless, they were willing to be adventurous and walk this journey with me. They were willing to do research to figure out how to help. It was a learning process for all involved. Then, colleagues put me in touch with a mobility instructor who has had experience in working with individuals who are blind, hard of hearing and in wheelchairs. This particular instructor has worked with veterans who have come home with all sorts of disabilities that they have developed from being at war.

Finally, things have started falling into place. Finally, I will have the help and support I need to continue to lead a fulfilling and productive life. It did take time, and I thought that I would never get there. I felt so discouraged, but I still kept fighting and still kept pressing on. I knew that in my heart that if I never gave up, I would eventually get the help and support that I needed to get where I wanted to be in life.

I will say that it really should not have been that hard for me to find support. I do realize that I had it better than many people because some have to wait years to find the right help, whereas I was able to find good help in a matter of months by networking. Even so, I have learned some important things by traveling this journey, and I want to take what I have learned and improve life for those who are blind with multiple impairments.

One thing that I propose that the blindness community can do to make life better for people who are blind with multiple disabilities is to equip training centers to work with people who are blind with a wide range of impairments. A one-size-fits-all standard approach must not be the only way, and each person can have a program tailored to meet his or her specific needs to ensure optimal independence and a good quality life. Additionally, I want to see all teachers for the blind be trained in working with people who are blind with multiple disabilities. This way, individuals of this particular population can access help quicker and get back to leading a productive and fulfilling life which will help loads with self-esteem and improve emotional and mental health. There will not be so much trouble getting the help because all teachers for the blind will already know what to do, thus will be able to address the special needs of this group. I also want to see those who are blind with multiple disabilities be represented more in the NFB. From what I have noticed walking on my own journey, individuals who are blind with multiple impairments are underrepresented overall, and many of us fall through the cracks. I believe that having a division in the NFB for those who are blind with multiple impairments will be a major help to our population because this division can focus on needs specific to those who are blind with multiple disabilities and can put time and effort towards improving the type of help and support that is received. The NFB is a powerful organization that has a good track record for ensuring the rights of blind people are protected, and this organization has certainly played a huge role in the successes I have gained throughout life. Since the NFB has made life so much better for the blind, I believe with my whole heart that they can also do the same for those who are blind with multiple impairments.

In the meantime, I will continue to be a spokesperson for those who are blind with multiple disabilities. I will speak out about the unique difficulties that we face, and I will provide my own insights into being part of this demographic. I hold onto the hope that one day, finding help and support will be much easier, and our needs will be met without having to fight so hard.

When You’re Disabled, Emergencies Pose An Even Greater Risk

In the past few months, we have seen too many tragedies, both natural and man-made. It’s natural for all of us to worry and wonder how we can prepare ourselves for the next emergency. But, for those of us with disabilities who communicate or move in different ways from the rest of society, emergencies can bring unique challenges. In the article below, Kit Englard describes the measures she’s taken, as a DeafBlind woman, to ensure she receives needed information during an emergency. She also describes the actions that ordinary citizens can take to support people around us who may need a little extra assistance.
When You’re Disabled, Emergencies Pose An Even Greater Risk