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.