Living with low vision Advocacy Story

At a recent low vision group meeting I attended a woman came and spoke with us about self advocacy. What made her talk so interesting and unique is that
instead of providing specific tips or talking legalese she told her story. As she talked it occurred to me that we all have an advocacy story of our own
to tell. Here’s mine.

I learned how to advocate from my parents. When they were told that I would be taught Braille because I am blind my Mom and Dad insisted that it was
important for me to learn how to read print first. Because of their persistence I am able to read large print today. That was the right choice at the
time however, I will say this, if my parents had encouraged me I might have decided to try reading Braille at an earlier age.

I wish I could say that as I grew into a teenager I was less stubborn and more thoughtful regarding my needs and wants. But sometimes what we want isn’t
what we need. When I turned 13 my mobility instructor decided it was time for me to acquire my first cane. I hated it. I didn’t want my friends to see
me using it and I didn’t think my vision was bad enough to need it. Of course this meant I began advocating to the detriment of myself. My instructor realizing
this knew there was only one solution. Let me learn the hard way. So she scheduled a night lesson and told me I could decide whether or not to bring
my cane. Of course I chose not to. The lesson did not go well and my instructor was impatient and angry. But it was because of that night I was able
to grudgingly accept using that cane for travel after dark.

When I graduated from High School I really wanted to attend college and become a teacher or journalist. The state of PA had other ideas. They wanted
to fit me into their little mold which at that time meant I’d either work in a sheltered workshop or I’d be sent away to become a vending stand operator.
Those were the only options I was given. Not being satisfied and expressing my displeasure I began my own crusade to find work. Because I didn’t let
those in charge of the money tell me how they wanted me to live my life I was able to work in a variety of jobs within the disability community. Most
of these jobs involved me teaching or writing in some form or other. I was even fortunate enough to provide peer support to some individuals along the
way.

When most people hear the word advocacy they probably think about demonstrating or trying to be heard above everyone else. Self advocacy isn’t always
that way. Sometimes it’s assessing the situation you find yourself in, learning all you can about your various options, then making a decision and sticking
to it as I did regarding employment.

Now I face my greatest challenge yet. Since I have a hidden disability it is more important than ever that I self advocate. People don’t understand my
sensory over load issues and attempting to explain them is sometimes interesting. For instance when I tell someone that the fire siren or vacuum cleaner
is too loud they always want to point out that I must have more sensitive hearing because I am blind and that they understand it must be louder for me
then for them. What they don’t realize is that it isn’t the volume, tone, or pitch of the sound it is how my brain is processing it. It is the same with
my other senses. I’m learning to speak up in a new way. I have to alert people when I need to change my environment to accommodate my needs.

When I’m faced with a major life decision I do a lot of research to determine all of my options. Then make a pro and con list to help decide which option
is best. I stick to my decision. Family and friends mean well but I am the one who has to live with the results of my choices. I speak up if I need
help. I don’t assume those around me will know what my needs are.

I hope sharing my story and strategies will inspire you to advocate for something you may need or want in your life.
by Guest
Donna Williams.

Few Discrimination experiences at its best In Kenyan context

Every Day:

1) Store employees assuming we’re stupid:Go to the grocery
store, the movie theater, a store in the mall, a restaurant or any
public-type place that has
employees, and five times out of ten you’ll run into an employee who
will automatically assume you’re ill-equipped mentally because of an
obvious visual
disability.

2) buses and matatus passing us by:If you live in a big outscuts like
Umoja, Rwai, Gidhurai, eastlands chances are you’ve experienced buses and matatus
passing you by quite often. People with disabilities
constantly complain that buses pass them by when they’re out on the
road trying to hail a cab.
3) Stairs in public spaces.You go to grab a coffee or meet a friend
for lunch, visit some office but wait – you can’t get in. This is architecture
discrimination at its
finest and we encounter it every day. Despite the misguided notion
that certain buildings are grandfathered-in to the persons with
disability act and do not need to be accessible,
umm no, they do. Any public space must. crossing most roads for us is a night mare.

4) Doctors not really listening.Out of all the people we encounter
each day who may possibly discriminate against us, you’d think medical
personnel would
not be on the list, however doctors and nurses can be some of the most
discriminatory people when it comes to how they treat people with
disabilities.
some one asked my tribe mate when she was pregnant “which animal did
this to you” you can imagine how it sounds when spoken in swahili! 5)
Wheelchair “quotas.”“Sorry, no more wheelchairs allowed.” Concert
venues, airplanes, city buses, amusement park rides – quotas on how
many wheelchairs
are allowed in certain places are a reality of disabled life. They’re
instated for safety, but they’re also highly limiting, generally only
allowing a
half dozen people with disabilities or so into an event or two people
who use wheelchairs on a city bus.

6) Strangers pretending they don’t see us.Once in awhile you’ll run
into someone who’s not very pleasant. Maybe they’re budding in line in
front of you,
or avoiding your gaze when you’re looking for someone to help you grab
something from the shelf. These folks like to pretend they don’t see
us, thinking
it’s easier to do that than just interact with us.

7) People taking our parking spots.It happens all the time –
able-bodied individuals parking in disability parking spaces. The
convenience is just too
hard to deny. And while this is all fine and dandy when it’s in the
middle of the night and there’s no one else at the store, they
generally take our spots
in the daytime, especially the good ones that have extra room for our
ramps. some government offices have turned the unisex accessible
toilets to be stores.

My Visit to Israel

#Israel Day 1

23rd December 2015

THE BUS RIDE

The experience since I arrived in Israel is quite enormous; I cannot get it off my mind.

From the moment I landed at the airport, I couldn’t believe the reception that I got. The access received was excellent. The airport attendants seem to have been taught mobility and orientation well. They surpassed my wildest dreams and expectations. As we drove through the streets, I was awaiting to find the usual traffic that we get back home. It could be habit, or adaptability to the traffic norms faced in Kenya, but Alas!! The experience left me with utter amazement. There wasn’t any traffic even for a single second. It felt like I had jumped time zones to what we are hoping for as far as accessibility is concerned for Vision 2030. I kept asking my host “Is there no traffic???”. In Israel physical access is the order of the day. Blind persons here literally have free transport as long as an official photo is taken and used at the bus stop or the train station as identification.

In my country Kenya we are advocating for better access of road, not just access but road safety. I pay for my sighted guide. It is a life-changing contrast to what I’m experiencing here in Israel. Isn’t it ironic that all I need is a photo to get a free ride all over Israel?? Being blind in Israel isn’t a disability, but an opportunity to continue living your life with as minimal hurdles as possible. The transport system is the best I have ever experienced. Access is a right and not a privilege.

#Disability Soldier.

Summary Points on Transport Features (Israel)

The Reality of Transport in Israel is as follows:-

  1. Accessibility is a right and not a privilege like we experience in Kenya.
  2. The Blind Certificate is similar to what we call disability card in Kenya.
  3. All Blind persons are simply required to produce their identification card at the public bus service and train station, and you go where you want in the country.

https://www.facebook.com/mugambi.paul.988/media_set?set=a.1027275033959454.1073741854.100000309023349&type=3 (bus ride)

https://www.facebook.com/mugambi.paul.988/videos/vb.100000309023349/1027277310625893/?type=3&theater (bus video)

  1. For the first time in history I crossed the busy highway- pedestrian lane without any assistance.
  2. I have not come across any potholes, sewage holes, trenches etc
  3. From the houses to the roads, it’s accessible. Accessibility is the order of the day.
  4. The blind rarely use the White Cane. They interact more with guide dogs. The guide dogs are offered free food by the government.
  5. Access is available even up to the beach while in Kenya this is a problem even in our own offices or houses. What I am experiencing here in Israel is no longer fodder for the imagination. It has become an actual reality that has me mesmerized day in, and day out.
  6. Drivers are trained to handle blind persons.

I will leave here with a lot of unforgettable memories.

VISIT TO THE HEBREW UNIVERSITY- JERUSALEM

This is a summary of my visit to Hebrew University Jerusalem. It is the home of Aleh organization where I experienced the Smart Board demonstration. The points below provide a summary of my experience.1. Deliver services to the Blind and Visually Impaired students in the five universities to pursue their academics.

2. run a pre-university for blind and visually impaired persons.

3. Coordinates the National Service for the Blind and Visually Impaired since they cannot join the regular soldier activities.

5. Supports the blind and visually impaired children with mentorship

5. Supports the children of blind and visually impaired parents.

7. Supports referrals for blind persons to get the blind certificate.

8. Operates Information Centres in the 20 Ophthalmologists’ hospitals where the newly blind persons are referred to and empowered about the services available for the blind in Israel and where to get them.

Blind and visually impaired people read in a variety of ways, just like anyone else.

  • In print: for many partially sighted readers, they use well-designed print information using a minimum 12 point size font on good quality. They don’t use shiny paper. This makes a real difference.
  • On a computer: Available software enlarges screen text. It speaks with a synthetic voice or shows information in Braille on a refreshable Braille display. Blind and partially sighted people can thus read electronic documents if they are designed with accessibility in mind.
  • In Braille, large print or audio is used since not everyone has access to a computer.
  • At the Hebrew University for the first time, I learnt how the visually impaired can be taught by making the environment accessible. With the smart board, you can become a lecturer using a smart pen and board. You can adjust the length, and colour using icons. Once you write on the smart board, it gets connected to the whole network of the computers.  As a student, you can adjust it to meet your needs e.g. colour, fonts, and the overall view. This is best for the visually impaired learners.

·         Persons with eyesight problems can utilize their residual sight optimally. This can also apply to cognitive and students with learning disabilities. This is what schools in Kenya need to adapt as we head towards inclusive education. As we talk about the laptops, we need to speak about the smart boards too.  Students with eyesight issues don’t need to strain on the board but concentrate on what the teacher has written, and it will appear on their computers.

#What a life.

#Technology is solving problems.

#Accessibility at its best.

#Disability Soldier Nasema.

  • The information assists all of us to make decisions, become involved with the society and lead their lives independently. Blind and partially sighted people have the right to be able to do this just like every other citizen.
  • This right to information is internationally recognized  (from Article 21 of the United Nations’ Convention on the Rights of Persons with Disabilities (External link).
  • Furthermore, it makes good business sense. As people are living longer and sight problems increase with age, a growing number of individuals will be blind or visually impaired who can join my clan.
  • Making information accessible is not expensive or complicated. It simply requires some awareness and a shift in the production process and staff. Getting accessibility not only benefits the blind and partially sighted. e.g. an accessible website will rank higher in search engines; accessible documents are easier to maintain, update, and convert into other formats.

https://www.facebook.com/mugambi.paul.988/videos/vb.100000309023349/1030429983643959/?type=3&theater (Accessibility materials for the blind)

https://www.facebook.com/mugambi.paul.988/media_set?set=a.1030419313645026.1073741855.100000309023349&type=3 (smartboard experience)
THE OrCAM DEVICE

The climax of my Israel visit is the actualization of my dream of getting to experience the Orcam device. The OrCam device is a small camera wearable in the style of Google Glass. It is connected by a thin cable to a portable computer designed to fit in the wearer’s pocket. The system clips on to the wearer’s glasses with a small magnet and uses a bone-conduction speaker to offer clear speech as it reads aloud the words or object pointed to by the user.

The system is designed to both recognize and speak “text in the wild,” a term used to describe newspaper articles as well as bus numbers, and objects as diverse as landmarks, traffic lights, and the faces of friends. As you can see from my experience, totally awesome.

The OrCam system has a simplified user interface design. To recognize an object or text, the wearer points at it and the device then interprets the object or scene. The audio information is transmitted to a bone conduction speaker, similar to the Google Glass headset.

Other Exciting Moments in Israel

 

 In conclusion, mostly in my country blind persons and majority of persons with disabilities do not have access to tourist sites. It is not because we don’t want to, however the environment has not been conducive and there lacks implemention of affirmative action on the sites according to the disability act 2003 which is currently on review.

I had a lifetime experience at the beach

I couldn’t believe accessibility was upto the beach!

Still in shock

 

https://www.facebook.com/mugambi.paul.988/videos/vb.100000309023349/1026007980752826/?type=3&theater (Mugambi in the gym) https://www.facebook.com/mugambi.paul.988/media_set?set=a.1025994720754152.1073741851.100000309023349&type=3 (Ashkelon Beach)
 

Visit to the Marina and Lighthouse,

If you said a Blind person cannot enjoy being a tourist then you are wrong !check it out.

https://www.facebook.com/mugambi.paul.988/media_set?set=a.1030424580311166.1073741856.100000309023349&type=3 (marina lighthouse)

life time mwenjoyo (life time enjoyment)

Whereby access to the route is fantastic, you can plan to visit it. You will love it.

There are beautiful sceneries.

The children are trained in boat sailing, diving, canoeing. It’s part of the school curriculum. Those who are hydrophobic mko na shida. (those of you who are hydrophobic will miss out)

Sweet melodies sounds blew the air waves while the wind blew at its best, at the Ashkalon beach.

I wish I could stay here longer. Going back to Kidero Potholes and Grass brings thoughts of misery. However, I intend to return to my country Kenya with knowledge and exposure   beyond my wildest dreams that will assist our cause to drive positive change in the Disability Movement.

I thank God for creating the opportunity to visit Israel, and to experience a different aspect of life as a blind individual. It is a memory that will be etched in my mind forever.

#DisabilitySoldier

#social justice is what we need as persons with disabilities.

We should say no more charity

I say “No more charity”