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Researchers AGAIN find poor skills in adults born blind with no mention of root cause: Life in a constant state of unsafe mobility

Writer's picture: Grace Ambrose-ZakenGrace Ambrose-Zaken
A Study Into the Relationship Between Adaptive Skills and Visual Impairment in Individuals With and Without Intellectual Disabilities Journal of Visual Impairment & Blindness 2023, Vol. 117(3) 224‐232 © American Foundation for the Blind 2023 Article reuse guidelines: sagepub.com/journals-permissions DOI: 10.1177/0145482X231180615 journals.sagepub.com/home/jvb Henriëtte van der Aa1,∗, Femke Jonker2,3,∗, Peter de Looff2,4, and Robert Didden2,5 Abstract Introduction: In this study, we explored if low vision or blindness affects adaptive functioning in individuals with and without intellectual disabilities, using the adaptive ability performance test (ADAPT). Method: Two hundred and nine ADAPTs were collected from individuals with low vision and blindness who were in care or lived independently. ADAPT scores were compared with 2642 ADAPT scores from sighted individuals. Separate comparisons were made for intellectually disabled and nonintellectually disabled groups. Results: ADAPT scores of low vision and blind individuals in both intellectually disabled and nonintellectually disabled groups were significantly lower than those of sighted individuals. ADAPT scores did not differ significantly between low vision and blind individuals. Reference values were established for individuals with visual impairments with and without intellectual disabilities. Discussion: Despite some limitations of this study, we conclude that adaptive skills are lower in individuals with visual impairments than in sighted individuals. Cross-cultural studies are required. Information for Practitioners: The

This 2023 study compared 209 adults with a mobility visual impairment or blindness (MVI/B) with sighted adults. The authors did not give much background on the participants with a MVI/B. For example, they did not specify age at onset of the MVI/B. They surmised, "It is to be expected that this difference influences the extent to which adaptive skills are acquired" (van der Aa, Jonker, de Looff, & Didden, 2023, p. 231).

Reading between the lines, we know that adults who become blind as adults retain the skills they learned growing up sighted, unless otherwise impaired. Yet, most of the individuals they studied had been located through care institutions for individuals with a visual impairment in the Netherlands.

Prior research has shown that children born with a MVI/B do not become effective at adaptive skills for daily care. This is the first study that used this specific instrument the adaptive ability performance test (ADAPT) to evaluate adults with a MVI/B's skills and compare them to sighted adults.


The ADAPT test van der Aa, et al., (2023) used looked at eight skill areas:

1. basic self-care, hygiene, and responsible eating (7 items);

2. household skills (6 items);

3. society skills (7 items);

4. social alignment (9 items);

5. applying school skills (8 items);

6. dealing with money, mail, and insurance (4 items);

7. daily structure and schedule (5 items); and

8. making responsible choices (16 items).


Their comparison showed"...that a visual impairment results in significantly lower levels of adaptive functioning compared to sighted individuals, irrespective of an intellectual disability" (p. 229).

The authors found that across the board, these 209 adults were not competent at skills their sighted counterparts did to take care of themselves, and it was unrelated to intellectual ability. Further, they found it was difficult to determine the intellect of their blind subjects. This is because, IQ scores were available for only 4% of them.

Another problem was that "to substantiate a suspicion of an intellectual disability, one can look at a person’s level of completed education. However, the educational level of individuals with visual impairments is often not representative of their cognitive abilities.

Individuals with visual impairments more often attend lower levels of education (Heppe et al., 2020)" (p. 226).

The participants with a congenital MVI/B grew up their entire lives without safe mobility.

The authors never mentioned anything about the subjects' orientation and mobility. They didn't say which mobility tool they moved about with, nor how many hours a day they spent engaged in activities on their own. It is very likely that they did not spend many hours walking solo.

One question on the ADAPT is whether he/she "travels independently by public transport" (Jonker, et al., 2023). Let's be clear. Traveling independently is the deal breaker for most congenitally blind people.

I need sighted people to understand, when you are unsafe moving about your whole life, you don't like to move about. When you grow up feeling unsafe and do not move about, you are unable to take care of yourself.

Most congenitally blind people have spent their entire lives living in a world of unsafe mobility. That level of uncertainty about safety does real damage to people. That's why IQ doesn't matter - unsafe mobility negatively impacts children no matter how smart they are.


The Blame Game

In the world of research on blind people, there are no studies that suggest the danger of independently walking without any safety could be a contributing factor to their findings. Instead, most authors look to attribute the differences they find to the lack of quality of education.

For example, these authors left open the question of the impact of the care hospital environment, stating "The effect of hospitalization in a positive or negative sense cannot be ruled out" (p. 230).

Blame is easy and used a lot in this field.

I know for a fact, when these kids were nearing high school graduation and not demonstrating the skills needed for independent college attendance, the middle school teachers were blamed for not preparing them for high school.

When the children hit middle school with no skills, the middle school teachers blamed the elementary school teachers who in turn blamed the preschool teachers who blamed the early intervention providers. Of course, they all blamed the parents and somewhere along the line a teacher blamed the child with a MVI/B for not being motivated.


Did no one ever wonder how can I help this blind baby feel safe enough to walk?

I'm here to tell you that around the world what all children with a MVI/B have in common is they are growing up in a very different world from everybody else. They are growing up never knowing what the next step holds for them.

We can see - so we don't understand. Walk a mile in a child's visual impairment and see how many seconds you last. We ask our children with a MVI/B to live their whole lives like that.

I dare you to run, I dare you to walk around schools and playgrounds and forests and mazes and obstacle courses without your lower field of vision, or only a tiny pinhole of vision, or with a blindfold on. I want you to go about your daily routine inside and outside with only your arms and legs to keep you safe.


No peeking for the rest of your life.

You try it... I dare you. I double dare you. If you won't do it, and you shouldn't because its dangerous; then stop asking blind babies to do it.


I am asking every researcher to Stop proving that congenitally blind people are unable to achieve the impossible. We got it. What a shocker, they struggle to be competent in a world that doesn't prioritize their safe mobility.


We need to provide more safe mobility options.

We need studies that recognize their subjects are unsafe and have been unsafe their whole lives. We need to prioritize safe mobility in the lives of people with a MVI/B. When you do walking changes for the better (Ambrose-Zaken, 2022). Children who feel safe walking, walk more and with more walking comes learning (Penrod, Burgin, Ambrose-Zaken, 2024).

The child who feels safe to move, moves with ease and joy. A child who moves is an adult who can take care of his daily needs on par with his peers.



References

Ambrose-Zaken, G. (2022). A Study of Improving Independent Walking

Outcomes in Children Who Are Blind or Have Low Vision Aged 5 Years and

Younger. Journal of Visual Impairment & Blindness, 116(4), 533–545.


Heppe, E., Cornelisz, I., & Klaveren, C. v. (2020). Visueel in Beeld.

Arbeidsmarktuitkomsten van personen met een visuele beperking die Zvw ZG-

zorg hebben gedeclareerd in de periode 2015 t/m 2018 [Visually in the

picture. Labor market outcomes of persons with a visual impairment who have

declared Zvw ZG care in the period 2015 to 2018]. Amsterdam Center for

Learning Analytics, Bartiméus Fonds, Vrije Universiteit Amsterdam.


Jonker, F., Looff, P., Erp, S., Nijman, H., & Didden, R. (2023). The adaptive

ability performance test (ADAPT): A factor analytic study in clients with

intellectual disabilities. Journal of Applied Research in Intellectual Disabilities,


Penrod, W., Burgin, X., & Ambrose-Zaken, G. (2023). Study Result: Pediatric

Belt Canes Improved Children with Mobility Visual Impairments Safety and

Independence. The Journal of Visual Impairment & Blindness, submitted for

publication.

van der Aa, H., Jonker, F., de Looff, P., & Didden, R. (2023). A Study Into the

Relationship Between Adaptive Skills and Visual Impairment in Individuals With and Without Intellectual Disabilities. Journal of Visual Impairment & Blindness,



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